posted
Please help me, if you can. I really need your help with all of this. I don't know much about all of it and I;m just way too sick to spend much time on the computer, right now.
What are the best labs for me to have the following tests done:
Lyme - best test now, compared to years ago Prylouria (sp?) HPU KPU Methylation Cycle HLA (-DR? or ?) Co-infections - Babesia, Bartonella, Erlichiosis, etc... Any other important tests you can think of
It's been years since I've had a Lyme test, I know I don't detox well (both phase I and II), at all, and I've never been tested for co-infections.
I really don't want to start treating again, until I have some answers from some, if not all, of those tests, because when I've treated in the past, I've just herxed so bad,
to the point I could hardly function, then when I quit, if I made any progress, at all, it was very little and didn't last long.
I've not seen an LLMD or been treating for anything, for quite a few years now, because I just couldn't afford it. Now, I'm a whole lot sicker, to the point where I'm, majorly, home and bed bound, for the most part.
I don't have much money, at all. I have to use what little I do have and make the best of it, right now, before I get even sicker.
I've, finally, managed to save up some money now though, although I doubt I have enough to cover everything I need. I do have Medicare Part A and D now though, but I won't have Part B, until July 1st of this year.
My family doctor, seeing how horribly sick I am now and how much I desperately need to do something for treatment, has agreed to prescribe me Augmentin pills (a penicillin antibiotic with clavulanic acid (a potassium salt)),
with the plan for me to start taking it daily, at a low dose, and slowly build it up to a bigger daily dose, as tolerated.
They've also agreed, as well, to prescribe me low doses of Heparin shots, with the plan for me to start giving them to myself daily, at a low dose,
and slowly build it up to a bigger daily dose, as tolerated, because I have Factor V Lieden, which is a genetic blood clotting disorder,
plus my Fibrinogen is really high, which is not uncommon, especially because the infections I have are really bad, right now.
I've looked, quite a bit, into starting to purchase and take the Cowden Protocol supplements. I'm thinking seriously about doing it.
I'm not sure which part (drugs and/or supplements) I should start doing first and at what dose or if I should do something entirely different, but what and at what dose.
My family doctor is definitely open to any suggestions, until I can get to see a LLMD. What do you think I should do, until then?
Can you tell me if my insurance will cover any or all of the tests I've listed above or any tests you think I should have done? If yes, which ones? If not, which ones and how much do they cost?
Can you tell me if you think taking the Augmentin, along with the Heparin, is a good way for me to start treating again? What about doing the Cowden Protocol?
I know I need to start with one thing at a time and at a low dose, at that, but I just don't know which one I should start with first or none of them, at all, but instead something else. What is your opinion?
I'm certain my Lyme bacterial load is quite high, right now, as well as any and all co-infections I have, which I have many of the symptoms of that are really bad, right now.
So, I'm turning to you all, who know much more about these things than I do, especially considering the fact that I'm really not feeling well enough to be on the computer very long and do much reading,
to offer me you best advice, as to which tests I should have done first and how I should start treating again, as in what medications and/or supplements I should start taking.
I also need to find an LLMD, who will take Medicare Part B, once I'm eligible for it on July 1st of this year. I live in the S.W. Kentucky area and of course, the closer they are to me, the better,
but I believe I can utilize Angel Flight Ministries to fly me, for free, to see any LLMD, who will take my Medicare Part B insurance.
There's no denying, I'm a very complicated case and am in very poor health now, compared to where I was several years ago, so I really need to see one of the very best LLMDs out there, no matter how far I have to travel.
Any help you can give me in that area would be greatly appreciated. I haven't had any luck finding an LLMD close to me, who will take my Medicare Part B insurance.
Please, if you will be so kind, help me to figure all of this out. I don't know of a better group of people to turn to for support with these decisions.
I apologize for my post being so long. Thank you very much for reading it, if you've read it this far. Most of all, I thank you, in advance, if you will please take the time to help me figure out, just some of the answers to all of my questions.
I'm in a really tough spot, right now, but I truly believe, with the help of some of you here, you can help me to find a lot of the answers to my dilemma.
Thank you very much again. I sincerely appreciate any time you will put forth, to try to help me figure out some things I really need answers to.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
posted
I know IGeneX accepts Medicare as coverage, but am not sure about the Part B part you say you don't have yet. I suggest you call them tomorrow at 1-800-832-3200 and ask them.
If you're covered, great - you can do all the infections testing.
If you're not covered yet, you can either wait till July, or apply at www.lymetap.com for a 75% discount for IGeneX testing.
................................................
If you're going to have access to plane flights to anywhere, then I think it might be wise to get referrals to good LLMDs who accept Medicare, for when you get it in July.
Any good doctor can run basic bloodtests to see what your various blood chemistry is, regarding hormones, Vit D, inflammation markers, etc. If you need a list for your family doctor to do with you, people here can perhaps help make that list with you - it's very medical.
It has really helped a number of us to know what our hormone counts are, in order to know what to boost.
I did the detoxigenomic liver bloodtest through Genova Diagnostic Lab in NC and that showed whether I was able to genetically detox in many pathways. That info has been very helpful to my doctor in planning treatment.
Since I don't detox well either, I've been doing it by sweating every 5 days in a FIR portable sauna tent - if you can handle heat, that's what I'd recommend for detoxing.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
It looks like I'm going to have to wait until July, before I have any Medicare Part B coverage to cover any tests. It would be helpful to start gathering that information now though, so when that time comes, I know exactly what to do then. I will go ahead and apply at LymeTap though. It sure can't hurt anything.
Can you provide me the information I need, concerning what tests I need to have done, both basic and special, broken down into two lists? I do have financial assistance available to me, right now, at the hospital, so I assume my doctor can order all of the basic tests be done. My doctor may actually be able to find a way for me to have some of the special tests done too. All I know, right now, is if I will just bring them the lists, they will do their very best to try to have all of them done. I just need help with the lists. My thinking is, if anything on just the basic tests needs to be addressed and I can't get any of the special tests done, right now, I can be focusing on correcting those results, while I wait, already ready with my list, to have the special tests done in July, as well as see a LLMD again.
It's going to take a LLMD who deals with really complicated cases to treat me though and considering the fact they'll have to take my insurance and I'll have to travel, it's going to be tough to find someone. I'm going to go ahead and ask in the doctor request area here, so I can start going through them and try to figure out my best option. I do know they are few and far between and it will take some time to arrange for Angel Flight Ministries to get me there and back. Plus, if I were to call one of them tomorrow, I may not even be able to get an appointment until July anyway. If you have anyone particular in mind, please let me know.
I did the same liver test many years ago and it showed I have problems with both Phase I and Phase II of my liver detox pathways. That leads me to believe I really need those other tests I mentioned, plus the fact that I already have several hereditary genetic disorders and get much sicker than I should when I treat. I really need to see if I can find that test again and talk to my doctor about it. I know I was given a copy of it, when I had it done, but since my move, it will be like looking for a needle in a haystack.
I have a infrared sauna. I haven't used it regularly in a long time, so I don't know how I'd handle the heat. I know I sure couldn't stay in it long, when I used it before though, and that was before I've gotten much sicker now. The problem I have now is I live in such a tiny place I don't have room to use it, unless I were to try putting it in the bathtub or on top of my bed, which I'm unsure about doing. I know I definitely need to be using it though, so I'm going to try to see what I can work out, as far as the bathtub is concerned. Do you think is wise? What do you think about me using my bed instead? I just don't want to get all of that stinky sweat all over my bed, although I must say, either one or more of my co-infections, or I'm now in full-blown menopause, is causing me to have extremely bad night sweats, nearly every night now. My feet have been burning a lot too, especially the soles. Is it Babesia, Bartonella, both, or other co-infections, which can cause both of those issues? I'm thinking Bartonella, but I'm not sure about that.
With what little money I receive in social security disability, I have very little to purchase any needed supplements, therapies, etc., which I know I so desperately need. I so wish there was a place I could turn to that would help me to pay for them, but I've yet to find one. Do you know of one, even if I have a doctor's note?
So, I'm really stuck in a very hard place. So painfully sick, yet so poor, I can barely afford the basics. I've cut back on anything and everything I possibly can too. I do not buy anything that I just don't have to have and what I do buy, I try to use coupons and price match. I even asked for money for my birthday and Christmas, just to help me save for some of the special tests, especially those that insurance won't cover, plus some supplements I know I need to take.
It's scary, because I know I'm just going to keep getting sicker and sicker, forcing me to lose more and more of my functionality, which isn't much now, as I spend most days in bed and rarely leave my apartment now, if I can't figure out how to treat myself, like I really need. The big question is how? I've yet to figure that out. I've exhausted all of my resources and pleaded and begged with anyone and everyone I can think of. Lyme is certainly not just a physically and mentally devastating disease, it is also an expensive one to treat and as I have come to find out, since my divorce, has left me financially ruined, which has taken a huge toll on my health, since I just cannot afford to treat it the way I really need to.
I'm sure there are a lot of other people, who are in my same position, and my heart just aches for them. If I knew what to do, I'd certainly pay it forward and help them out too.
Thanks so much for listening. I look forward to your reply, with any help you can give me.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
Thanks for saying Hi and giving me some helpful advice.
I hope this finds you feeling and living well.
I'm going to post a doctor request here, as soon as I finish this. I don't think there are many who take Medicare Part B, especially the good ones, either. I still need to see a LLMD though, rather than do nothing and just keep getting sicker and sicker. I'll just have to see who I can find and go from there.
Thanks again.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
posted
I'm not good on all the tests.. You probably don't even need new Lyme testing, but if you do get the tests, get Igenex for Lyme and coinfections.
posted
Can anyone, someone, here please give me the two lists?
I don't even know where to begin, but there has to be quite a few of you all here that do.
Please help me, if you can.
Thank you so much.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
posted
Get you hormones tested. for thyroid, get TSH which your pituitary makes to tell the thyroid the body needs more, and T3 and T4. Get your cortisol levels checked this includes ACTH which is a pituitary hormone that stimulates your adrenals and then your cortisol level checked. Get your sex hormones tested, too. All of these hormones act on each other and if you are out of balance due to lyme, this is important to know. These are blood tests so you need to ask the lab if any of these levels need to be fasting levels. If you have pylouria you have infection in your urine. What most doctors do is look for standard infections and if it is caused by lyme or coinfections, this will not show. I recently saw a urologist who admitted that they don't test for everything. You should get a full red blood cell test and white cell test. Also, check ferratin levels. This has to do with iron and if you have rampant co-infections like babesia or bartonella, they can be using up your iron. Also get VitaminD levels checked. These can be low due to lyme. If you can, get a full vitamin panel with the B's included. If someone else is paying you might consider an ultrasound of the kidneys. They still can't decide which is the problem for me,bladder or kidneys. Right now I am symptom free in regards to bladder. There is a nurse prac. in Washington D.C. who works with patients with lyme bladder issues. Send me a private message and I will send you her name. She works with your health care provider but will request broth cultures for infection, which may be more money, not sure. Also,do the CD 57. Hoping you are maintaining.
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic