posted
So, because I have been sick so long.. and it took a long time to get my Lyme DX'd, I have been in denial that I even have lyme.
I had a second opinion with DR H's office and met with the PA (Dr H was on vaca so I couldnt meet with him ... She was very THOROUGH.. I am being put on this protocol for Lyme, Suspected Babs and Bart.
4 hour drive there, 4 hour appt, and 4 hour drive home.. it was VERY taxing on me, but no one has ever spent that amount of time with me.
Biciliin shots 2x a week and than 3x a week Zithromax 250mg MWF Plaquenil 2x daily Magnesium 2x daily Artemensia-3x a day for 5 days a week with 2 days off (babesia) Ultra flora 2x a day L-theanine- one a day (as needed) Sacchamycin 2x a day (probiotic) Multi Vitamin/Mineral daily NO SUGAR or YEAST...
Does anyone think this protocol is exxcessive?? It seems like A LOT of pills to swallow, wont your body get confused??? I am so scared to take all this stuff...
She also told me because of teh severity of my case if I dont show improvemnet in a mont or two I will go straight to IV...
Sorry this is so long.. I really need some help right now.... I dont know what to do?? She also said I had Autoimmune overlap, but I dont believe in autoimmune and she said it would most likey go away when the Lyme was taken care of.
I did well on the tetra and Zith for a few weeks and have started slipping back to the depths of my bed,,,She said at this point I need AGRESSIVE treatment.
I am being tested for.. as money comes in Babesia Bart RMSF C. Pnemonia Mycoplasma Q fever HHV6 EBV Thyroid all hormones (saliva test) Vit D all blood counts and function ESR, RF, CCP Celiac disease Immune functions/HLA-DR4 (autoimmunity) Parasites heavy metals
and the beat goes ON.... we dont really have the money to test all these things... we almost couldnt pay for the appt. or supplements... Very expensive.. We are doing the babesia IgeneX FISH first and than will get others as we can...
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
My advice would be to see if she allows you to start on all your vitamins to begin with bringing in a new one every day and then your antibiotics. This will make you feel reassured that all is ok with those - just look at them as a food source, that is all they are really, just concentrated and encapsulted so you have all the goodies your body needs to build your immune sytem and replace nutrients etc.
Then when you have your supplement regime in place start on your antibiotics.
Of course run this by her but the biggest part of healing it that you feel safe, comfortable and supported and remember your input is as important as hers - My LLMD insists on aggresive AB's but gets the patient ready mentally first as it can be so overwhelming at the beginning.
Remember you have to go through this to get through this but you are with an excellent LLMD and you are about to go on a journey that will get you your life back - Yes it can be tough, very tough but you will get to the other side of this.
posted
Ok, my honest and educated lyme opinion. She is giving you way too many things to start taking. She should not give you magnesium first off because there is conflicting reports that Mag feeds bart, so until she is sure you don't have bart, you should not be taking magnesium.
Plaq causes bad reactions in many people and should only be started once abx is started. The rule of thumb is to take one med at a time to see which ones you react ok to and which ones you may react bad to.
As for all that testing.....hogwash! There is no reliable tests for bart or babs or even lyme. Metal testing is also faulty. And the only kind of, but not really true test for celiac is an endoscopy which has to be done by a Gastroenterologist.
This lyme doc sounds like she's jumping the gun. And also, any lyme doc would be giving you something to kill the yeast in your body before OD'ing on all these meds.
Just not eating sugar or staying on a yeast free diet is not enough.
Get a second opinion and do a ton of research before you follow this regime, which in my opinion, is ridiculous
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posted
Peacesoul--- This IS my second opinion.... now I am even MORE petrified. I cannot spend any more money seeing a 3rd LLMD.... I dont know what to do?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Unexpected,
If it were me I would be scared too, And I would think your treatment should be gradual.
Can you call the PA and ask which general/basic abx to start taking for lyme, and then talk to your Dr. H. when he gets back from vacation?
And he really didnt give you anything to kill yeast.
Ultra flora replaces good bacteria. And being on all that you would need at least 50 billion.
Candex, Theralac, Oregano Tabs or Oil, Threelac (and there are others) are all products to help kill yeast.
Diet no sugar/or carbs if possible. Hard to do!
Good luck and keep us posted. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
I was prescribed Theralac and for some reason I didnt get it when we left....
Geesh I figured these people were very professional and wouldnt put me on things that would harm me... I was just worried about the amount of things I was being put on at once... I am now second guessing if I should just stay with my current LLMD?
Looks like I am back to square one.... which is NOT a good thing...
I traveled 4 hours there and 4 hours back to see who I was told THE BEST.... I have been waiting for 16 months to find out what is wrong with me. I started out with treatment with Dr P who I respect so much, but knew with the severity of my case I needed someone to treat me differently and I NEEDED a second opinion.
I cannot afford to see someone else, I cannot afford to stay sick any longer.....
I guess I am just screwed..... I thought I was in good hands and now I have to second guess everything again.....
I am at the biggest loss of my life right now.. ALL i want is a chance to LIVE again...
Dr H is on vaca which is why I didnt get to meet or speak with him.. he doesnt know me or my case so it would be impossble to contact him for advice.
Thanks everyone... back to square one
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
that is a lot of testing... but the drug list really isn't that extensive, they want to treat you aggressively. 3 of those listed are important probiotics. def take them!! i would maybe hold on the magnesium as already said. that practice is considered top notch. i would stick it out with them. that is who i see. i have a bigger list of drugs. babs, lyme, rmsf, myco positive! i want it all killed... i will do whatever it takes including taking out loans.
best wishes
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I humbly disagree with peacesoul....I don't think you can baby this stuff - you have to hit it hard!
I was much like you unexpected - scared to take so much medicine at once, but once I started taking it and feeling better I was scared not to!
Also, most of it seems to be vitamens, minerals and herbs and your body needs extra of all that good stuff to aid you in this fight.
I say go for it!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Have you ever been tested for coinfections? If so, which lab and what were your results?
If not, then my suggestion would be a Fry bloodslide as a minimum. They also test for RMSF and Q fever now -- don't know how the price compares to other labs.
I wouldn't worry about the number of supplement pills. I don't think there are too many. However, I always add only one new supplement at a time for hubby and try to wait at lest 4 or 5 days if not longer before adding anything else new.
I count the Artemesinin with meds not supplements. Would wait for test results first before using this.
Personally I would do a parasite test from DiagnosTechs lab -- don't know any other parasite lab that is much good. If you have a parasite problem it could affect absorption of supplements and even meds if you have gastritis.
Would not be in a hurry to test viruses. Most everyone will test positive for those if they have been sick long enough. For most people the tick-borne treatment is more of a priority -- then if you aren't making progress the viruses can always be followed up on later.
Heavy metals can also wait -- unless you have had recent dental work or have many fillings.
Not sure what genetic marker they are looking for. If it is HLA-B27 then I wouldn't waste my money. A functional detox test (not the genetic test) from Genova Diagnostics would be the cheapest and best way to start looking for genetic markers such as methylation or sulphation detox pathway problems.
Celiac testing is not very reliable. I would just try eating gluten free for a month. If you feel better then great. A functional test for celiac and casein (milk protein) intolerances is offered by Great Plains Lab. You can have an intolerance and not actually be allergic or have the genetic markers.
Immune function testing might or might not be helpful -- can cost a lot and not really make a difference to treatment plans.
That would be my first question regarding all tests -- will test results change my treatment plan? Sometimes it is nice to know lots of info, but if it won't help you get better then you can save your money.
The thyroid and hormone testing is probably needed and could give you more energy if you need supplements.
As for the meds, hubby has not done the Bicillin or plaquenil. Is on Zith.
I really think you need to know which infections you have before making too many med changes.
I think you are just going to have to trust your gut over which doc you feel the most comfortable with.
Have a lot of the tests been done before and now they are being repeated? You can waste a lot of money doing the same thing over and over.
Hope some of this info is helpful.
Let us know what you decide.
Bea Seibert
P.S. Noticed they seem to be testing for everything except Ehrlichia/Anaplasmosis. Wonder why that was not included?
Also would suggest testing for hypercoagulation.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Unexpected - I just read a couple more posts you got in while I was typing mine.
You don't NEED to see a third LLMD!!! They are also going to prescribe several medications and supplements.
They all do! There is NO way around it.
You have got to get over your fears and take the dive - your only other option is to go lay in the bed and die.
Sorry to sound so harsh, but that's how I see it and you are asking for opinions here.
I don't think anyone here WANTS to take medications of any kind - but we have to.
Granted, some go the way of herbs, some abx, some rife, some all three, etc. but the bottom line is that there are risks to all of it.
The riskiest endeavor however, is to do nothing. To bounce from doctor to doctor to doctor meanwhile not treating and letting this infection steal the life from you.
You will be fine Unexpected...but you've got to take a leap of faith. It's hard and scary and emotionally exhausting but well worth it in the end.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
I had a similar episode with a PA of an Infectious Disease doctor.
She diagnosed me before she even took a drop of blood! Said I didnt have lyme, I had gotten a parasite from kitty litter!!
Needless to say, I hit the road--fast. Especially since my first WB showed bands #23 and #41 as positve.
I wouldnt switch LLMD's I would talk to THE DOCTOR himself, especially if he comes highly recommended.
You might shoot yourself in the foot. Take it one step at a time.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Unexpected, your fears are normal. This is a very confusing path to navigate with lots of conflicting info.
Now you have conflicting responses to your new protocol, too.
Breaking your list of meds and supps into two separate lists, it doesn't seem as unusual (to me, another patient).
Daunting, yes, because it's an aggressive treatment but if yours is a severe case, that's what you may need. (I started out with a similar list, and similar fears, so I do understand where you're coming from on the fear.)
Bicillin, zith and plaquenil is a fairly common combo, and the advantage seems to be that it looks like it will address all 3 forms of Bb. That's a good thing.
The supplements are similar to the ones listed in Dr B's guidelines, and are useful in supporting your healing. I didn't compare your list to Dr B's list, but from a quick look at your list they seem similar.
There has been a lot of conflicting info regarding magnesium, and I had eliminated it. However, my partner attended a lecture by a *very* prominent LLMD last week, and apparently he feels that magnesium supplementation is necessary for re-building our cells - he stressed it over and over. It's hard to decide which way to go on that one.
My LLMD recommends starting one med at a time, then waiting a few days to add the next new med. If there is an allergic reaction, you want to be able to know which med caused the reaction.
The testing, well, maybe you can go at it slowly, addressing what is most important first. And re-evaluating what needs to be done as you go. Bea gave you good ideas there.
Give it some thought, and make the decision that's best for you and your family.
For what it's worth, I think you are in good hands and this will be a good start. But only you can decide how you want to proceed with this.
Hope you will soon be on the road to wellness, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Unexp, have no fear the np & pa in this office are top notch & doc h reviews all the cases.
Its normal to see np / pa as most do not see doc often . Both myself & my wife are in treatment there. (about 6 mths ) with some progress on a similer abx program. been a slow go but thats normal I guess.
Hang in there and give tx a chance . We have had no problem with similer tx. make sure you get the probitic supplments and take religously. good luck Doc (nick name)
Posts: 95 | From nys | Registered: Jan 2008
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Evergreen--- I NEVER said that anyone in that office was NOT good.. They come very highly reccomended. I knew for the get go that my appt was with the PA, but he was supposed to be there for a half hour meeting with me. I guess they messed up scheduling and he was actually on vacation.
The PA's are HIGHLY trained by DR,H and what she put me on is what Dr H would have put me on. Actually she said he probably would have put me on more!
I have a positive IgeneX WB, I was clinically DX'd with lyme by a LLMD in CT and was treated by him for the last 2 months. The only thing I didnt really test for was co-infections, well through Quest but I dont count that.
The PA was DX' my co-infection solely based on symptoms and my positive WB. Also, she was doing all testing to rule in/out everything possible because I HAVE been so ill for over a year and it started so suddenly with the birth of my daughter...
I felt they were VERY thorough, unfortunaltely we dont have the money to get all the testing they want. I also just found out my insurance will not cover the bicillian shots and we cant afford those either.
She said I needed agressive treatment because of how sick I am and pretty much disabled.... I just was worried about the amount of meds... I am not used to it and am sensitive to many things...
All in all I just wanted some help from other lymies... maybe I should have not asked, not that I dont appreciate everyone, but it is gotten a lot more confusing for me...
I dont want ANYONE to think that I am speaking badly of Dr H or his PA, I think she was WONDERFUL I might add... she Spent 4 HOURS with me.... All I am asking is about lyme protocols because I am new to this and scared, and frustrated and sick, and lost.. I was in no way complaing about that office...
Also they wanted to do all that testing to get a good idea of what I am dealing with... I am very sick and have over 50 symptoms.. she said I am a severe case.. They want to make sure everything is covered and get me better
She said it was quite obvious by my + WB and plethora of symptoms that I had Lyme and Co's.... I think I am being tested for Anaplasmosis because my son has it.
Evergreen, I would not NOT recommend them, they spent a LOT of time with me and went through my whole history.. c'mon I was with her for 4 hours.
MY ONLY complaint is the amount of money the supps were... but they would be that expensive ANYWHERE... I felt that they were just trying to sell me supps and then my fiance made it quite clear to my paraniod mind that they just want to make sure I have ALL ground covered!
I say GO to them... They are VERY thorough and although they want the testing done, they said do them AS YOU CAN AFFORD TO!!
GeomfNj---She didnt take blood because I brought her my + WB from IgeneX plus all the other blood work I ahve had done. My IgG wb is positive for 5 bands... 18+ 28+ 31++ 41++ 45++ 34-39 IND
She was DX'ing me on that WB, my symptoms and history.. She is testing me for the co-infections to help her clinical DX of them
Lymelaurie28--- Hey Girl, I know I need to bite the bullet.... I am very confused about everything and juts got freaked at the amount of meds I would be on.
To anyone I missed, I am sorry I forget what I read and than have to go back and read it and by the time I go to respond I forget... So annoyiong!!
I just want everyone to know I appreciate your opinions.... I am going to write a list and fax it to them to make sure I do everyhting right. I know that I need agressive treatment I just need to bite the bullet.
Just, from someone going from never being sick and never taking meds, to being VERY sick and needing MANY meds is a shock, but I know I have to do it. I just want to be sure it will be safe in the process.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
what is saccamychin? Is that another abx?
I dont think your abx protocol is all that intense. You will be on zmax three times a week. It has a long half life, so it will still be in your body, but you wont be killed with it.
I think this is smart, since you probably have a very high germ load.
I would just start one thing at a time though. From experience if you are super sensitive that is the way to go. Gradual. You took the zmax before, so you know how you react to that one.
If you cant afford the IM bicillin i would call the office to see what else you might be able to take in its place.
Hang in there, this disease is tough.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Wow, they go right for the shots? Took me over a year of failure on orals for one LLMD to even consider them.
Dr. H is an excellent LLMD and he would be my choice if I lived on the East Coast.
Ummm... to answer your question, everyone is different. This will certainly kick LD rear and co-infections, you may handle it just fine. Zith is known to bill Lyme, Bart and sometimes Ehrlichia. All bases are covered here, they are going for it all.
Saccromyces boulardii is a probiotic (asked above).
If you herx too hard, let them know and they can adjust your dose.
No hero's or heroines are necessary when herxing and the point is to kill the bacteria... so if it gets rough call and insist on help w/detoxing and or abx dose adjustments.
I am pretty sure Dr. H uses Glutamine to help w/herxing...so when you do see him, you may want to ask him abou that (natural -helpful).
Don't be afraid, just remember if it gets too rough, you can always decrease to more comfortable levels.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Unexpected,
Holy crap, you have a lot of positive bands and a lot to deal with!! No wonder she didnt do any testing. And thank God it was from a reliable lab.
At least you are ahead of the game in that respect.
Totally understand that you can be paranoid when they start selling supplements and spitting out tests right and left. Cha CHing!
But, I think you are in the right direction.
Best of luck and do keep us posted. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
It appears to me to be a pretty well thought out plan. Good that they are covering the different forms of Bb and co-infections. It may be a rough start with die-off but I am very impressed with their office.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Okay - sorry to add to the confusion -but PEACESOUL: "Ok, my honest and educated lyme opinion. She is giving you way too many things to start taking. She should not give you magnesium first off because there is conflicting reports that Mag feeds bart, so until she is sure you don't have bart, you should not be taking magnesium."
But isn't this why we need to take a magnesium supplement? I ask because on another post someone was talking about weak and tired legs.
Someone said take magnesium for the crakling in joints and cramping?
I could stretch my legs and hear crackling from my ankles up the top of my calf. I had cramping in my feet and legs.
So I've been taking a magnesium supplement for a couple weeks or more and the crakling has gone away completely.
The cramping is less.
I don't want to feed those bugers - but if Babs is depriving my body of magnesium, don't I need to replace the magnesium?
I'm so confussed. Peedie
Posts: 641 | From So. CA | Registered: May 2008
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posted
Unexpected, I can't speak to the particular regimen Dr. H's office gave you. And I do agree with the people here who speak highly of his office's experience, knowledge and reputation (and also his sincerity).
In my experience with Dr. H.'s office, the scary part is that they are terrible, between appointments, at monitoring patients and responding to serious adverse events.
There are days at a time when you can't even get their answering machine. And if you are lucky enough to get the machine, it doesn't mean you'll get a return call. And if someone does call you (it did happen once), it may not be someone who can help.
That said, it's not like I know of any better option than staying with Dr. H. and following his advice. I wish I did.
I hope things go well for you.
Posts: 204 | From ma | Registered: May 2007
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bettyg
Unregistered
posted
unexpected,
glad you had a good 4-hr. educational apt. yesterday!! it's worth the money t be thorough and to answer all your questions.
CONFUSED! you will be from now and for years to come; darn disease!!
yes, start ONE MED at a time; every 4-5 days add another one.
my 2nd llmd started me on 22 supplements; 10 ALL AT SAME TIME! had reactions but adding the rest made me worse and worse.
you need to know what your body is acting AGAINST what med!!!
start a symptom log for these meds as well so you know when something is starting/stopping and HOW YOUR BODY REACTED.
best wishes! get your thyroid done; that should be covered by IN NETWORK, ETC. can't remember the rest of your list.
i went thru i think all or 99% of that 3 yrs. ago and learned many more things wrong with me whih is what i'm working on now!
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Peacesoul
Unregistered
posted
Peedie, because the treatment of lyme is a VERY VERY faulty science, we cannot take anything to heart. We need to play the "trial and error" game.
I was taking mag and it was making me sicker and my LLMD told me to take it. When I heard it was not good if there is suspected bart, I emailed my LLMD to advise her. She agreed b/c of what she learned and what her other patients where saying.
LLMD's are as knowledable as many lymies here and they hear the up to date info as we hear it.
I'll stay away from mag until I hear fullproof evidence it's safe when one has bart.
Unexpected: sorry I made this more confusing. When I first joined "lyme world", I was overwhelmed with all the info as well.
You need to trust your LLMD and your own instincts and do a TON of research (like you're doing here)
But I can tell you FOR SURE, you do not want to take all these abx/supps and vit's at the same time. You also do not need all these tests. I would say get every test you can if these tests were fullpoof, but they are far from even reliable so save your money.
Start your abx slowly and see how you feel. Stay away from gluten and see how you feel.
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I see the same PA in hyde NY and she started me on a similar treatment plan.
I must say from personal experience, hitting as many TBD's at one time worked the best for me.
It is a lot of meds, and if you feel sick, don't hesitate to call. You have to remember this is a wicked disease, and will take aggressive abx to knock it out.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I have just scanned some of the posts, so I don't know if this has been addressed or not.
My daughter has been ill for a long time and has a complicated case. We have tried a number of protocols.
Bicillin has by far been the best of the antibiotics to cover lyme for her. She has also done babs treatment with zith and mepron that has also helped.
So starting bicillin and adding in the other meds would be what I would do.
I also agree that adding things slowly so you know what is responsible for whatever reaction--good or bad--is the wisest thing to do.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
here is how I and some others handled going to Dr. H.: we started out on one ABX at a time because otherwise you will not know what you are reacting to if you have a bad reaction. You might take a week or two to slowly build up and mix these meds.
My daughter was so ill on Zithro alone that they had to cut back her dose: on that one alone. Then slowly added more.
I had some bad reactions and needed to change meds.
Three of us went to Dr. H. for 2 years and all 3 of us handled our meds very differently.
Do take notes - make yourself a blank calendar and mark down when you start each item, and how many, and how you feel. Do this so you can know for your own sake but also because when you return you will be asked detailed questions and you will also need to be able to make it clear to them why you may feel one way or another about any of the things they told you to take.
Going to Dr. H. (and his various PAs) taught us all to make detailed notes and it did pay off to go into here prepared to discuss what happened to you between visits. Also make notes re. checking out and paying at the office: what do need to purchase that day, when is good time to come again. They are very busy and you are sick: sometimes we all would forget that I needed a bottle of some supplement.
Plaquenil was one I had to stop; another was time-release Biaxin. Each time I was able to pinpoint exactly what had changed and why, because I kept notes on every little detail. You might wonder if that is being obsessive, but it does help immensely!
The other thing I did was make myself a daily pill & time chart, because you need to take your vitamins & Ultra-Flora (or any probiotic plus maybe S. boulardi) apart from your antibiotics, and squeezing all this into one day (especially as most of us need extra sleep) is a challenge ... as well as terribly confusing. By making a chart I could also be sure I would not forget something.
It is all very expensive - you do not need to buy their supplements as you can get similar things online at a possibly cheaper price (iHerb, Vitamin Shoppe). Also, one friend who went could not afford any supplements and once they were informed of her financial restrictions they stopped telling her to take them. So do tell them when it becomes overwhelming and they will tailor the program for you.
Do not expect a 4 hour visit next time. We usually had 20 mintues allotted after the initial visit and often got 30 mintues if there was much to discuss. Another reason to always go in there with notes & reminders.
For us it was a 3 1/2 hour - we often spent the night: we made last afternoon appointments, went out for supper after (the Eveready Diner is superb!!) and spent the night at the Roosevelt Motel: this relieved us of so much stress and fatigue, as we were all sick and had to share the driving no matter how we felt.
We all agree that our 2 years with Dr. H. office helped us tremendoulsy but it did not "cure" us; unfortunatley we could not keep up with the expenses and the traveling. But we stuck it out for 2 years and we know it changed our lives for the better.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi,
I had a similar treatment, and it was VERY effective! I am much better after years of illness.
However, I never took more than 2 bicillin shots/day, and I started that months before bringing in the macrolide. Give yourself some time to adjust to one tx before starting another.
Good luck, this is a protocol that can definitely address tick-borne diseases, in my experience. I did not however, take artemesia with the rest.
Posts: 2557 | From home | Registered: Aug 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Shandy, One thing is for sure; every LLMD will have a different opinion and a different protocol. It is pretty much impossible to get two different LLMDs to give you the same opinion, as comforting as that might be.
I think the reality is no one knows exactly what is going to work best, and each of us may react differently. All you can do is decide what protocol you are going to commit yourself to, and follow it.
There are also many conflicting opinions; it is just the way it is right now. This is definitely NOT an exact science.
No matter what you decide to do, it is going to take a leap of faith. You just need to decide to take that leap, and b egin to get better.
Good luck. You are definitely with one of the top LLMDs, one I have honestly never heard a bad thing about.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I want to Thank EVERYONE for coming on and giving your advice/opinios
I honestly didnt think it would have turned out like this, I am surprised!
I just wanted some advice because lately I have been in a REALLY bad way mentally and of course physically.... but my brain is not co-operating with me lately.
I am very confused, and it has been hard to know right from wrong.. How to make decisions and do anything right.
I feel like I am losing my mind, but I am trying so hard to just get through this the best I possibly can.
I understand I have to do what is best for me and I dont even know what that is???
I need to trust somebody, and I have to do it fast...
Thank you again!!
Tracy, I REALLY REALLY hope I can make it to your lymefest!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Shandy,
Hey sweetie - I bet you are confused now! The reason I feel so strongly about "hitting it hard" is because the first LLMD I went to BABIED my disease(s).
I started out on zith 500 mg a day and that was it for three months. Then I did two months of flagyl 500 mg a day.
Then he took me off everything and I sunk hard and fast. THEN he put me on 100 mg of mino a day and that's it.
I continued to deteriorate until about two months ago and you know what turned it around?
I ordered mino and flagyl from an online pharmacy and have been treating myself at 300 mg of mino and 750 mg of flagyl along with 1 malarone a day (he did prescribe me the malarone after almost a year of begging for it).
And you know what? The difference has been night and day! I have had some pretty harsh physchological herxes but I've continued to get better and stronger.
I also take a high quality multi-vitamin plus heavy doses of pro-biotics along with co-Q10, fish oil and 5000 mg of vitamin C a day.
It's expensive. I'm broke - robbing peter to pay paul - but my gosh it's worth it!
And I'm pretty proud of myself I do have to say. If someone had told me 4 years ago that I'd be in this mess and basically treating myself I would have never believed it.
It is so tough though...I have plenty of days still when I wake up and my situation hits me - my illness, my finances, the loss of family and friends and I think, "What a nightmare".
It is so, so, so much to bear, but I keep plugging along anyways, because I HAVE to.
I read somewhere that a lot of people think those of us with Lyme are weak - but we are actually the toughest, strongest most tenacious people out there...
You are stronger than you realize - just trust your gut - you usually can't go wrong that way.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
There are reasons to be taking magnesium as it is excellent as a detox measure and if bart is present and gobbling it all up some damage can happen if one is low in magnesium.
Magnesium is also excellent for help with calming the excitatory neurological stuff.
Just as you can't starve lyme, you also can't avoid giving your body good nutrients that are essential.
It is good to talk to the doctor about this, of course, but I've seen magnesium nearly work miracles. It can be marvelous.
posted
you really do have to do what feels best for you, and hopefully you know your own body. I am very sensitive and I have to take lower doses ABX and be cautious with combinations.
Some Lymies have ended up in the emergency room or hospital due to a severe herx or a meds reaction.
While going to Dr. H. I learned to look out for myself and occasionally had to argue with them regarding the treatment, make them listen to me, the individual person, who had reactions to the combos, or even to a single med.
It is very difficult and so confusing to start out at Dr. H. and one feels so alone with such a list of things to swallow. They will wait for a reaction before making an adjustment. You have to look out for yourself. In a few months you will feel like a pro!
If you have doubts, postpone a medication and wait for your next visit to discuss this with them. This is okay to do.
I have progressively improved on lower doses of ABX; you do not have to blast your body, and I knew I could not. On the one hand a friend can swallow any number of ABX and not have any problems. On the other hand I had atrial fibrillation from time-release Biaxin alone (was fine on regular Biaxin) and hallucinations from Mepron.
Go slowly if that is what you think you need; only by going slowly can you keep track of a reaction to one specific medication.
You have heard differing opinions but I think most people have told you to listen to your won self: if you feel doubtful, then back off.
Also you can call the office - they return phone calls in the evening and they always returned mine. It does not matter which doc or PA you talk to as they all follow Dr. H. rules and he is very strict in training his PAs, although as time goes on you might find one PA whom you like better or feel more comfortable with. You do not have to stick with the same PA and some are easier to talk to, and make you feel calmer, than others.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Shandy, you are in good hands. I see the same PA as you and she is correct, Dr. H would have put you on more.
You are not taking that many actual drugs. Most are supps/probiotics. All you have to do to get the Theralac is call the office and they will mail it to you, it's easy.
I take WAY more stuff than that! This stuff will get you better.
I was sick like you are in Jan 2006 when I went in there. I am 90% today. Just went on vacation and rented bikes for half a day .... in Florida! I did fine .... we did lots of walking, etc. and I held up as well as hubby did. That is what aggressive treatment gets you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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jamescase20
Unregistered
posted
I like it I like it.
New on the lyme frontair
Efflux pump inhibitors.
Lyme has one (bicillin will override that dont worry)
the other bugs have these pumps too, bart, some natural epi's claims to include rosemary tyme blackpepper
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
A very well thought out and specific plan has been laid out for you.
Fear is normal.
However, the Deer that freezes due to panic from the headlights....has a bad out-come due to indecision.
This is NOT a disease state in which one must stand in fright.
Fear is normal....however, its time to suck it up.
I've had abx....almost kill me with the pain from bacterial die-off.....but guess what? 6 Years later and I am in Darn good shape.....year 4 was the turning point.
But...the fact remains.....had I NOT gone forward with my treatment...year 5 woulkdn't have worked out for me.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I've had dramatic improvements with Magnesium. I wasn't dxd with Bart but if Byron's stat is right that 90% of people have Bart...
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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I am taking things slowly and adding things gradually...
My Insurance DENIED the Bicillin and Zithromax , They said I didnt need Zith over the 5 day mark or something lke that.
The Bicillin I paid outright for 230$ for 8 shots I believe... THAN a pharmacist from heaven calleed me and WANTED to HELP me. Me and my fiance are shocked at this pharmacy. They have been on the phone with my doctors and insurance company since Monday.
They refunded my money for the Bicillin and gave me TWO free shots to start off with until they get a Emergency PA approval for the Bicillin shots AND GET THIS... SOMEHOW they got my ZIth approved!!!! I just CANNOT belive these people exsist!!
They said more than likey they will get my bicillin approved. I am beyond words and SO grateful that someone took a look at me and decided that they wanted to help. ANY other time I get my meds, if its denied its denied... I dont know why they decided to help, but I am just so grateful they are!!
They also made it VERY c;ear to me that my doctor office (Dr H in Hyde Park) was AMAZING and they had never dealt with more commited people. The woman told me and my fiance that they were really trying to do everything they could to get my meds through my insurance...
I am SO happy to hear this, because I know now that they are reliable and care!
Thanks everyone again and I will keep you updated.. Crossing my fingers for the Bicillin... if they got me the zith I think they can get me the Bicillin!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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... She was very THOROUGH.. I am being put on this protocol for Lyme, Suspected Babs and Bart.
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