seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm at a point in my treatment where I don't know anymore. I'm starting to get disgusted I've been on some Abx in one form or another since Aug-08 (mostly monotherapy).
I'm starting to wonder about Sutherngrl's thread and possibly if it relates to any aspects of my life.
I'm only ever given Biaxin by my ID doc (1,000 mg daily). I admit life has been a lot better then a year ago though. I've done things the last two months I only could dream of before, but I feel silly as they are stupid things any regular person wouldn't blink over. I've been refused Malarone after my two 3-day stints of it. The ID doc thinks I'm fine.
My ID doc intently tracks a blood test called free plasma hemoglobin. He believes it's the end all be all or something. Even though my Babesia WA-1 titer (IgG) hit 1:2,048 at LabCorp two weeks ago, he's refusing to treat it as my free plasma hemoglobin has finally come in normal twice. It used to be elevated everytime to a degree, but I strongly suspect lab error in some instances. Labs aren't too bright.
I've driven myself short distances. I couldn't before. I've done some lawn work a few times, some other stuff, etc. I always had some OK days, but since I fell ill there has been constant 'payback' after an activity and still it continues.
I'm losing track of reality in a way. It's like when is enough enough? How do you get back to work? I used to work full-time, not I struggle to work part-time at home. I do intense computer work. If I spend more than 4 hours staring at spreadsheets, I get weak and my balance seems off. Pretty dumb considering it's a 'sit-down job.' It embarrasses me and my wife can't understand why I can't work now that I have a couple better days.
I read all the stuff on this forum and start to wonder what's going on. It's like there's always some reason someone is ill: parasites, heavy metals, yeast, Lyme, Babesia, Bartonella, RMSF, non-lab proven endocrine issues, AI-type issues, dental issues, EMF sensitivity, detox pathway problems, ear issues, porph...., and gosh knows how many others over the last three years. Most accounts I read here aren't even established by any lab results.
Clinical diagnosing occurs endlessly or self-diagnosing. Only a few here have the miraculous power to know exactly what's being addressed by whatever supplement, exact dosing of the supplements via ART, and all the answers. I can count on two hands the experts on the forum over the years. We all believe their writings are gospel and some spend thousands on the proposition of their ideas being the miracle they hoped for .
What people DON'T admit or talk about is their level of de-conditioning, general functioning before illness, and other relevant issues. If there's weight issues, we can blame the infections for it even! Some do, others I'm not sure. it's private of course, but it clouds the picture when you don't know it all. It makes you believe these evil infections are the cause of the world's problems.
What keeps you all going? In a way, I doubt SG's guess at the issues, but a little part of me wonders, what if? Even if that's true, it's no easy path and I surely am not belittling any mental problems. No matter how I feel physically, I'll have some level of PTSD after losing so much of my life. The question is did the chicken or egg come first at times.
Just pondering.....I'm at the point now where it's a fork in the road. Do I keep going and see a Dr. H in NY to get more aggressive or back off and see what a baseline is for me.
I do know every time I take Diflucan I feel horrible. Lately, I've been breaking into chills, some stomach upsetness, weakness, stiff/sore joints, etc. The scare of C-Diff is always there for me too.
This is a world where we rest all our hopes on the Mom and Pop labs like Igenex to determine our issues. I pray to go# they are accurate and I'm not shelling out my life savings on a pipe dream and too dumb to listen to mainstream docs.
Self-doubt is a bad thing. Are there really corkscrew bugs in my body doing this or am I nuts? Still WHY CAN IGENEX ONLY FIND THESE MIRACLE WB BANDS WHEN NOT ONE OTHER LAB LOCATED ONE? Did just time pass (almost 3 yrs from being ill) and this made life easier to a degree? Did stopping real life (not working, taking on less tasks, etc.) make the issues disappear a bit? Things that make you go hmmmmm..
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Personally, I am not ready to give up without trying more aggressive treatment. I have mild symptoms and walk around feeling like a healthy person but don't want to see what could happen if my symptoms get worse. My daughter has suffered from a 2 1/2 year severe headache and life is passing her by.
I understand what you are saying about people staying sick and thinking it is because of this or that and there is no hardcore evidence, at least by mainstream standards. And it is hard to completely let go of mainstream standards, even when you know you can't really count on them for everything.
Prior to Lyme experience, I have found mental issues to be caused by physical problems. My daughter was diagnosed with ODD and depression. We discovered she was gluten intolerant and that went away completely! I was always "stressed out" and in hindsight, a little OCDish, until I went gluten free. Now, with an even more stressful life, since my other daughter is very sick with Lyme, I feel less "stressed" than I did then.
We found out about this gluten intolerance from a lab similar to IGeneX. It was started by someone with celiac disease and is dismissed by most doctors.
My daughter with Lyme has had episodes of raging that have gone away with Lyme treatment. When we treat for bart, the raging flares up again. So, until proven otherwise, I tend to believe that many mental problems result from a physical cause. Lyme or something else, I can't say.
The bottom line for me, is that if you buy into the chronic Lyme idea, the "mainstream" way of getting rid of it is aggressive abx treatment, maybe even IV. Without trying that, I don't feel I have really fully eliminated Lyme as an answer.
My daughter had a bullseye rash that went untreated a few months before she started getting headaches and rage episodes, so I believe hers is Lyme. My case is less clear, but I feel so much better on abx, that I am convinced my symptoms are caused by bacteria. If she hadn't had the rash, I would be questioning this more than I am, probably.
Someone correct me if I am wrong, but I think that IGeneX uses different strains of the bacteria in its testing, so it is able to get more positives.
Posts: 984 | From US | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Well I never heard of monotherapy helping... except w/I.V. Tigecyl. Even then people have used other things with it.
Maybe it is time to go to another llmd. You've been on here long enough to know what's working for people.
You've helped so many others find answers, now it's your turn.
Hope others w/more experience are able to encourage you with other opinions & ideas.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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tickled1
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Member # 14257
posted
seekhelp,
I understand how you feel. I feel like I'm at a fork in the road as well. Just over the last few days I feel I have slid back to a place I was almost two years ago. I feel I can't take antibiotics anymore due to stomach issues and even if I decided to try IV, I don't know which pathogen I'd be chasing as I've been dx with Lyme, Myco, CPN, Bart, Babs, EBV.
I know it's not all in my head b/c tests prove my immune system is a mess and that I'm still positive for at least Myco.
MRI's and spinal tap abnormal as well. So, I now I'm fighting something but I don't know how to go about it anymore and am not willing to throw away money just to see if maybe just maybe something else might work. Where does that leave me? That's the million dollar question.
For the first time in 2 years, I had to have my husband take time off from work to care for our daughter. I'm scared to death and don't know where to turn right now and don't have the money for that matter.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Hoosiers51
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Member # 15759
posted
I think de-conditioning is a huge issue, and that is why lately I have decided I am going to slowly get myself back into really good shape, then I can see what symptoms are left.
I think when you are deconditioned, it's hard to know what's what anyways.
Lymies really need to be sure to exercise while they are recovering. Though of course there are right and wrong ways to do it. But you just gotta go for it. It's not fun, trust me!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Seek,
For heaven's sake, get a real LLMD!!! It sounds like you've been hobbling around without one. Why limit yourself to only a few very minor improvements?
You need someone who is willing and able to rx real treatment for you! Your ID doctor obviously won't do that. Why give up or doubt when you haven't had any comprehensive treatment at all?? Don't short-change your life and health!
I'm not trying to scold you, only to encourage you to go after adequate treatment.
PS It sounds like your ID doctor is the ghost here!
Posts: 3771 | From around | Registered: Mar 2008
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quote:Originally posted by Hoosiers51: I think de-conditioning is a huge issue, and that is why lately I have decided I am going to slowly get myself back into really good shape, then I can see what symptoms are left.
I think when you are deconditioned, it's hard to know what's what anyways.
Lymies really need to be sure to exercise while they are recovering. Though of course there are right and wrong ways to do it. But you just gotta go for it. It's not fun, trust me!
Amen.
I've been trying to figure out how to get some exercise in the Texas heat. I took apart the treadmill since it squeeked so loud and I think I busted it.
Exercising boosts your immune system way more than any dietary supplement, drug, etc.
When my chest pain isn't as bad, I was thinking about just going up and down the stairs as my exercise. I don't want to push it too much, because last time I did that I just ended up back in bed. Walking is where I am going to start at.
I really would enjoy walking outside, but the Texas heat and humidity is really hard on me for whatever reason. Perhaps late night walks may be best. I often feel better after the sun is down, so maybe it's a better time for exercise anyway.
It's quite pathetic really. I used to be very active biking 20-30 miles a day.
And seekhelp. If you own a microscope or know anyone who owns a microscope, just look for babesia yourself with a wright stain. If you know a microbiologist, that would help. They are easy to see as long as your vision works, and if you see them, take pictures. If you have an access to a DSLR camera, you can get an adapter off ebay or something that can easily take pics. If you bring high quality, professional pictures of the parasite you took yourself, I don't think your ID doc could deny that there is still an infection.
I'm not a doctor, but a titer that high is suspicious in my opinion. I know IgG is supposed to mean a past immune response, but that is ridiculously high and looks more like your body is struggling to keep the parasite at bay.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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For heaven's sake, get a real LLMD!!! It sounds like you've been hobbling around without one. Why limit yourself to only a few very minor improvements?
You need someone who is willing and able to rx real treatment for you! Your ID doctor obviously won't do that. Why give up or doubt when you haven't had any comprehensive treatment at all?? Don't short-change your life and health!
I'm not trying to scold you, only to encourage you to go after adequate treatment.
PS It sounds like your ID doctor is the ghost here!
This is all great and grand.... but a lot of us cant afford "real" llmds. I am hopefully going to see dr. c at the end of the month but right now I dont even have enough money in my bank account to pay for the igenex test.
I find it simply amazing when people say they are going to get stem cell treatment... or multiple abx or whatever else there is. when I was researching LLMDs in new york I was quoted prices from $400-$2000 and that was for one visit!
Ive spent thousands on test... I am bankrupt at 23 years old... I still live with my parents with no hope of ever getting out because I feel like **** everyday...
The choice of which doctor many of us see is not usually based on how good he/she is said to be on the internet but how much they cost. I BELIEVE ALL LLMDS ARE OVERPRICED! Atleast those that arent covered by insurance.
I think if we had the choice we would all work with Dr. K or a Dr. B but, I just read Dr. K's "A look beyond abx" and oh my god! Even if you could mustard up enough money to see this man the treatment is 8 stages long. Most people would not have enough money to get pass the first stage. It would come down to buying some expensive gluten free food to nourish yourself or treating parasites.
Seek, all I can say is keep searching tackle what you feel needs to be taken care of. I understand the monotherapy as that is what im on now. I can recommend an LLMD that takes insurance in NY if you PM me but even then I believe you will only get monotherapy.
To everyone else please dont get me wrong im not trying to say youre foolish for taking high priced treatments but to some there is no way we would ever be able to afford them. Hopefully, soon some concrete answers will be given but Im not holding my breath.
** edited to remove doctors' names **
[ 06-02-2010, 08:50 PM: Message edited by: sixgoofykids ]
Posts: 286 | From St. Louis | Registered: Dec 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
These are just my most recent thoughts.....Don't take them wrong please. Its just what I am going through and thinking right now.
I think there are two things that play a huge role in recovery. Reconditioning is a big one. My LLMD says reconditioning is seriious and can take 2 years after infection is gone to get to a place where you can function normally. That makes total sense to me, since I have been mostly sitting or laying for 4 years straight.
I also think being dragged through LD He**, that you can't help but come out of it with at least some partial mental disorder. That is why I decided to treat that part and see where it leads me.
And I am also starting to try to do more normal things. Can I go out there and shop all day or work all day.....No, not yet. But like my doc said that might be 2 years down the road.
Is my mental state affected.....you bet ya. The ups and downs of this illness has exhausted me mentally, to the point that I can't tell what is physical and what is mental. And I'm not saying LD is all in your head by any means. I know I had LD, no doubt. Its knowing when its over that is hard.
Am I stopping lyme treatment at this point.....NO. But hoping 6 more months might be a good stopping point for me.
I just recently decided to focus on more than just antibiotics as the end all cure for LD. My body has improved enough the last few months to push myself a little now; to gradually start to recondition. Not to expect a miracle in a week or a month, but to begin to crawl out from under that cloud of hopelessness. I am putting my focus more away from antibiotics and infection and more toward the healing of my mind and the reconditioning of my body.
Do I think some ppl stay sick for years and years, possibly. But I also think there comes a time, and each person has to figure out when that time is for them, where maybe they have conquered the infection and they just are so mentally and physically exhausted that they can't recognize it.
Do I think some ppl go overboard or get obsessed with LD....yes.....me for one; but I am getting away from that. I have too!!! Its the only way to get a logical picture of what is actually taking place in my mine and body.
I guess I think that just because you still feel bad after 2 years or more of treatment, it doesn't neccessarily mean the infection is still active. If a healthy person layed around for 4 years, they too would feel very ill.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote:Originally posted by TF: One month it is with the PA, the next month it is with Dr. H.
This is not how it was for me.
He also varies how often you go in person depending on what treatments you are currently having. If you're on heavy abx, it won't be every month, but it will be more than twice per year. You also have to have monthly bloodwork done.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Massman, I called the ghostbusters, but they wouldn't come here. lol.
Thanks TF. 2-3 x per year is doable. Once per month for phone consults gets costly when insurance covers none of your appt due to it being a phone consult. Like you always say, it's the rich person's disease.
Six, would you mind letting me know how it was for you from a visit frequency perspective?
You've given me a lot of info on Dr. H from a treatment side already and it's much appreciated.
I'm scared of going septic or something on endless scripts w/o local help, but what choice do we have? I live in a state where no LLMDs/docs will do the right form of treatment.
Good points SG. I agree with many.
Yeah, I too am amazed how many very sick people can afford so much here. I guess many buy it even when they can't afford it praying they'll get better. If I was single, it would be more doable. Having a family makes you more conscious on where your dollars go I believe. You can chase pipe dreams forever or whatever ghost infection you are clinically Dxed with.
Having a positive titer for Babesia gives me more confidence than my 7-8 IgG bands on my Igenex WB personally. I really wish I could re-run my CD-57 to see where I stand now given my health has improved some. Probably not much change since I never took multiple Abx.
JKMom, Igenex supposedly tests for two strains only. Unless the world has that other strain (claimed to be STARI), the picture is always muddy to me. I'm not starting this argument again as it's been debated many times. I guess I'd need to be a scientist/lab worker to really understand. I take all with a grain of salt. It's the only way to be.
I got a lot to think about I guess.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Seek, I think many ppl go completely broke trying to get well. They loose their homes, borrow from relatives, max out credit cards, etc. All understandable since without your health, what do you have.
A few of us are lucky enough to have a healthy spouse that makes enough money to make ends meet.
And then I guess you do have those that are wealthy and don't have to worry about how far they travel or if their insurance covers it.
Then of course you have the ones that can't work, have no one to turn to and can't get any kind of treatment. That is the saddest thing I can imagine.
So if you are in any of the other 3 categories, other than the last one, then maybe going to Dr H is doable!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote: What people DON'T admit or talk about is their level of de-conditioning, general functioning before illness, and other relevant issues.
The "bar" has been lowered so, that you have to crawl on your belly to get under it.
A "good day" in hubby's lyme mind is if he is able to be out of bed.
This from a man who worked 50+ hours a week, had a full life with a dozen intense hobbies and interests, friends, family etc.
Hubby will tell everyone who asks he had a "good day". Perception is no longer reality. Sadly. This week, he is running a fever, sweating profusely, weak, dizzy, nauseas, yet he tell me he feels "fine". And the sad thing is, he believes it. Sometimes, I think I have lost my right mind. Posts: 252 | From USA | Registered: Sep 2003
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Seek help. I don't know if I understood everything in your email. I'm a total lyme brain tonight, I'm off meds for the moment.
Why not start with what you know you have. Your Babesia labs are off the charts. My thought is if you try to treat that you will feel a difference. If you can't go to DR. H. go to someone that will treat the Babesia. Have you ever taken any Babesia treatment?
I can understand the feeling of chasing ghosts. I feel that way sometimes.
Posts: 2232 | From USA | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Haley,
I have treated Babesia but not that aggressively. I started off in late '08 with a LLMD giving me 4 pills of Malarone per day for 3 days. He said that's curative.
He then gave me two pills a day each day for a month and then one pill a day for another month.
After that, no more.
An ID doc gave me a short stint of Clindamycin only (900 mg a day) for 10 days. I felt better those days, but he said no more. He wasn't treating Babs, but an elevated ASO titer.
Another out-of-state LLMD gave me two 10-day courses of Clindamycin/Quinine (600 mg/300 mg respectively). The other 20 days it was Biaxin/Plaquenil (said to treat Babesia BUT nowhere does Dr. B say it's adequate Babs treatment from my readings).
Lastly another local ID doc gave me Mepron/Zith for 5 weeks, but had no idea what WA-1 was. I wasn't responding well to Zith. I lost my functionality compared to being on Biaxin and he refused to bend on a switch. He said Biaxin is not intracellular. My highest dose of Mepron was 2 tsp daily and that was damn hard to take.
Another 4-5 months passed and I got this crazy high WA-1 titer and my other ID doc gave me 4 pills of Malarone for 3 days for two cycles then said all is fine.
That's my story. I saw one of the best LLMDs in the country according to many here, but I guess the LLMD didn't believe Babesia was that serious? I actually found out about my elevated WA-1 titer after my own research and begging an open minded PCP to test. NO ONE asked if I'd been to the West Coast, which I did many times.
Interesting, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Haley,
I have treated Babesia but not that aggressively. I started off in late '08 with a LLMD giving me 4 pills of Malarone per day for 3 days. He said that's curative.
He then gave me two pills a day each day for a month and then one pill a day for another month.
After that, no more.
An ID doc gave me a short stint of Clindamycin only (900 mg a day) for 10 days. I felt better those days, but he said no more. He wasn't treating Babs, but an elevated ASO titer.
Another out-of-state LLMD gave me two 10-day courses of Clindamycin/Quinine (600 mg/300 mg respectively). The other 20 days it was Biaxin/Plaquenil (said to treat Babesia BUT nowhere does Dr. B say it's adequate Babs treatment from my readings).
Lastly another local ID doc gave me Mepron/Zith for 5 weeks, but had no idea what WA-1 was. I wasn't responding well to Zith. I lost my functionality compared to being on Biaxin and he refused to bend on a switch. He said Biaxin is not intracellular. My highest dose of Mepron was 2 tsp daily and that was damn hard to take.
Another 4-5 months passed and I got this crazy high WA-1 titer and my other ID doc gave me 4 pills of Malarone for 3 days for two cycles then said all is fine.
That's my story. I saw one of the best LLMDs in the country according to many here, but I guess the LLMD didn't believe Babesia was that serious? I actually found out about my elevated WA-1 titer after my own research and begging an open minded PCP to test. NO ONE asked if I'd been to the West Coast, which I did many times.
Interesting, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
MENTALLY you likely will feel better on very high doses of Prozac if you chose to go the Rx. route.
If you want to try a strictly alternative approach, let me know and I will give you some ideas.
A WB test will only be accurate IF you do pre-loading of Mg and B vitamins a few days before the testing.
It TAKES Mg (and Ca) to make HEALTHY antibodies which is
what the WB measures.
I will pull old information from my files. Some of the links may no longer work.
Why is testing inaccurate (Western Blot)?
"The levels of antibodies (immunoglobulins) decrease in experimental animals (mice, rats and hamster) by up to 60% when the supply of magnesium is significant reduced.
There is a direct correlation between magnesium deficiencies in rats and reduced immune defense against allergic reactions and cancers, in particular leukaemia and lymphomas."
The above website has changed, so go to this pubmed abstract instead:
Proc Soc Exp Biol Med. 1975 Mar;148(3):620-4.
The effect of magnesium deficiency in mice on serum immunoglobulin concentrations and antibody plaque-forming cells.
Elin RJ.
Therefore, magnesium deficiency has profound immunosuppressive capabilities in mice by significantly
reducing the number of antibody synthesizing cells
and serum immunoglobulin concentrations.
PMID: 1093189 [PubMed - indexed for MEDLINE]
Our own antibodies are not "perfect" fighters against Bb, why?
Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.
The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but is dependent on the presence of Ca2+ and Mg2+.
Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.
The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.
PMID: 9125579
A ``novel form of antibody-organism interaction?'' I don't THINK so!
E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions 1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+ 2. Mg is required for synthesis of proteins, immunoglobulins included 3. Antibody-induced complement activation is Mg dependent 4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte
At the OUTSET of lyme, there is a very "significant" drop in the level of Mg...Romanian abstract.
And a LOT of other things tumble too...B3, B6, Zinc (metalloproteinases need zinc), vitamin C.
Without those we can't MAKE EPA (omega 3)and with our antibody to CB2 kapoot ("fab") the body will hunt for a back up to lock onto the CB2 receptor.
Mead acid...omega 9. Our body uses its abundant supply of omega 6 fatty acids to make the omega 9 which is an anti-inflammatory.
That acid is an agonist for the CB1 and CB2 receptors....
Problem is AA "happens" and the prostaglandin 2 series kicks in. Not good.
There is a very serious imbalance between the Omega 3 fatty acids and the Omega 6s.
The cure is 2 fold...get the inflammation down, and hit the pathogen.
There IS more than one way to do that.
Did you read my "malaria" post? It is very similar to babesia. Take a look at my post and follow the link to the graph. See what significantly reduces it?
Omega 3s.
Where there's a will...there IS a way.
Don't give up.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Ok seekhelp. I misunderstood the post. You have had many different treatments it sounds like. I'm sure it is frustrating.
I would like to get the labcorp test for WA1. All my Babs tests were negative but I think it is definitely a problem for me.
I'm curious - what are your Babs symptoms? I hope I didn't already ask you that. Do you have a lot of brain fog?
Posts: 2232 | From USA | Registered: Aug 2009
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hello Seekhelp:
I've been on lymenet since 2004, been sick most of my life, and have seen several llmds in the U.S.
AFter reading your initial post in this thread, I am convinced the only way your questions will get answers is IF AND WHEN you go see Dr. H. When you have REAL lyme/babs treatment, you'll understand much better, the ghosts will acquire tangible faces, and you understand your mission.
Go to him. I am going to him for a consultation in August. I was his patient for 3 years, until we moved away in 2005. Now I must return to him for his expertise on babesia.
Only when you have a reall llmd working on you will the fog lift, in more ways than one.
Good luck to you and I"m very sorry for your suffering.
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would just treat it with the known babs protocols and see what happens.
If you get better you know if you don't look elsewhere.
I'm like you the tests can be wrong-the doctors can be wrong-and I think many times in Lyme we have
so much to address its like sticking your worm in the water to see if you get a bite. If you do reel it in.
But you can't tell what you caught till you start reeling it in. You might have a bluegill or a giant catfish.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
It sounds to me like you have been trying to treat chronic Lyme and coinfections with doctors that don't really believe in it. It is no wonder you feel that you are chasing ghosts.
Maybe you could determine a set amount of money and time to spend with Dr. H or someone like him and then see if you still feel the same way.
I don't feel so strongly about chronic Lyme that I go around telling people about it, because we have not had much success in our house with treatment so far. But if you think it is at all possible, (and you must, since you've been here so long), it doesn't seem like you have really tried treating it properly.
Posts: 984 | From US | Registered: Dec 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with many others here. You need an ILADS educated LLMD. Babs can be very difficult to get rid of since lyme and some of the other co-infections can suppress the immune system so much.
Your treatment for babs to date seems minimal and not at all what I would expect from a doctor who truly understands chronic lyme and babs. I wouldn't expect you to get much better until you at least get adequate treatment for babesia.
I fly to another State to get treatment because no one in my State will treat. It's not easy coming up with the money but it has been worth it.
Wishing you the best of luck, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
All: I'm just starting down this path. Elisa 5.0 Western Blot 10 bands positive.
Treated by an ID 60 days Amoxicillin. Have an appointment with an LLMD August.
Have been sick it seems like forever, like being in a fog, joint aches, memory loss, boiling blood.
Oh, testing done in 2006 along with treatment when I went to my GP with dizzy spells. I just found out the results in gathering my medical records to take to my appointment in August.
I don't know what to expect but I am willing to try.
Posts: 2 | From Bel Air MD | Registered: May 2010
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posted
I will PM you about the frequency of my visits, seek.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
The only alternative is to keep trying. I felt pretty good when I was self-treating. Now that I'm seeing an LLMD again I feel like hell (most likely not a herx).
I'm running fluconazole only currently...
For me, conditioning has had no correlation whatsoever to state of illness. I was a good athlete before lyme and still maintain a regular exercise program and work f/t.
I have no history of mental illness either though anxiety has been a symptom and is due to the chronic manifestation of physical symptoms.
So who knows...the disease is complex...there may be genetic stumbling blocks that hinder healing in some...it takes time.
Think of your docs as pitchers. If they don't get the job done, go to the bullpen.
I'm not promoting it but I know you're smart and well-read Seek so self-treating is always an option as well.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Just to chime in....I am one, treating with multiple orals since March 2008 and now currently 5 weeks into IM Bicillin. I am still sick.
I have, fortunately, been able to exercise during much of this time, only when my feet were to numb, my balance way too off, or just feeling too awful would I take small breaks.
I am chasing everything under the sun as far as Lyme, Co-infections, EBV, Myco, low thyroid etc., etc. My symptoms are all very neurological. I was very sick for 2.5 years prior to dx.
I wish I wasn't still so messed up; but, the truth is, I am. I will continue to fight and hope that I will get better. Though admittedly, on my really rough days, mustering up hope is very difficult.
I just wanted to say, even when some of us are able to stay physically conditioned, use multiple treatment approaches...we're still battling this terrible illness, unfortunately.
Is there some sort of missing link to why I'm not getting well? Probably. It's just figuring out what seems to be the problem....ugh.
Wishing us all wellness.
TS
Posts: 566 | From West Coast | Registered: May 2008
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