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Lillimul..how was the appt. with Dr. H

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Posted 11/10/2008 2:42 PM (GMT 0)
Hi Leslie-

I was just curious how the appt. went last week. I am seeing John and Dr. H on Friday and am kind of nervous. I am not sure if they will agree to IV again. Right now I am on Mino/Zithro combo and it doesn't seem to be doing much. I had really bad vertigo the other night an hour after taking Zithro. So that really scared me and for the next few nights I was afraid to take it.

I just received my co-infection testing back and it shows a positive titer for Babs and I have been on Malarone for 10 months. Strange huh? My Bart titer came back as 1:40 which is suppose to be negative I believe.

I hope your husband is feeling some better on the Rocephin. What else is he taking? I was thinking that maybe I relapsed is because I wasn't on any other abx while on IV.

I hope you are still feeling better too! Please write when you have a chance. Take care.

Kim

Posted 11/11/2008 2:58 AM (GMT 0)
Hi Kim!
Thanks for checking in.
We had a good appointment with John. Dr. H wasn't in the day we went last week. I've been feeling better for the last month or 2 (especially since adding 20mg cymbalta a month ago) and decided to stop abx, and do limited cowden herbs and see how I do. I am hoping that I have knocked the lyme and co-infections out of my body with the last 7 months of abx and malarial tx for babs. It's been 14 months since I got bitten, doing on and off limited tx before getting to Dr. H and doing 7 months aggressively. I'm ready to see how I do off of them now.

My husband is tolerating the rocephin now but incredibly fatigued and having significant cognitive herxes(like he went to the bank to get his prescriptions.....). He can't work while he's like this and not driving until he's safer. This is a guy who has a masters degree and could teach chemistry and math. He's also taking septra, zithro, plaquenil and mepron as well as the full cowden protocol. And he's also doing glutathione every other day. Yesterday he had the first day with energy since starting rocephin about 2 weeks ago. Today he was fatigued again.

I know another patient of Dr. H who has been on rocephin for about 8 months along with other abx and has been steadily improving especially the last 3-4 months. She will be continuing with the rocephin indefinitely(at least the next few months). She was sliding for quite a while before having more good days and also has had disabling fatigue. The improvement in her has been encouraging to witness.

Why don't you think they will put you back on rocephin if it worked so well for you? I remember you had to stop because of your gallblatter, but with that no longer an issue, it seems like you probably weren't on rocephin long enough.

Have you taken mepron for babesia? My husband was switched from malarone to mepron because of his babesia symptoms. I wonder if mepron is stronger than malarone for babesia? My understanding is that the co-infection testing is often inaccurate, particularly if negative, since the bacteria hides out of the bloodstream. Was your babs titer high? I had a low positive babs titer.

If your current tx isn't working well, I would think you have a good case to go back to what was working well. Didn't your other treating doc (Dr. D) suggest going back to lV rocephin? I hope the appointment goes well, that you feel heard and get a change in tx that brings better health. Please let me know how you're doing. Good luck on Friday. Take care,

Leslie
Posted 11/11/2008 1:25 PM (GMT 0)

Leslie-

I am happy the appt. went well for both of you. It is wonderful that you feel able to stop the abx and just go on the herbals for a while. I am hoping for that day..

I guess I am just not sure what they will decide to do. The last time I saw Dr. H he told me that many of his patients relapse after being on IV and he feels that Bicillin works better so that is why I tried the Bicillin and that did nothing for me. My doctor here did write them a letter suggesting that I do another course of IV and that the only reason it was stopped was because of the gallbladder problem.

I was on for 6 months but am sure it would have been much longer since I was having such great improvement. I think maybe if they give me some different orals along with the Rocephin maybe I won't relapse as quickly. I feel as though I am back at the beginning. It is very discouraging. My leg symptoms are now in my right calf as well and I hadn't had that in 3 years and when I am sitting or laying down I feel as though I am on a rocking boat. I have had that for a while but it has become more intense. So I feel like the whole last year's improvement is totally gone. The fatigue/exhaustion is well...there are no words to explain it. The summer was okay but now I have slide backwards even more.

I had a low positive for Babs but have been on Malarone for 10 months. My first Babs was negative so I don't know if it is because I am being treated. It will be interesting to find out what they will decide to do. I hope Dr. H is there that day because I don't think John will make the decision on his own.

I had terrible fatigue with the Rocephin too so I use to do it at night and then go to bed soon after. I also did the glutathione which didn't do much for me. But then there was great improvement on the Rocephin for me within 6 weeks so tell your husband he will get there even though it seems endless.

Thanks for the mention of the other patient on Rocephin. It is encouraging to hear that and gives me hope they will approve it again for me. I will let you know how the appt. goes on Friday. We are bringing our extra Bicillin and giving it to the office. I have about 20 unused injections. One other thing..what did John give you the Cymbalta for? He mentioned that to me last time but can't remember what it would have been used for. Thanks for writing back and I will keep in touch..Good luck with the herbals and take care

Kim

Posted 11/11/2008 6:16 PM (GMT 0)
Kim,

Sorry to hear how far you've slid backwards since stopping the rocephin. The bicillin didn't help my husband either- and he was on bicillin for about 4 months. Even though he is majorly fatigued and having cognitive herxes with the rocephin, he says for the first time in YEARS, his physical pain is nominal and his arthritic symptoms and numbness have gone away. At least there is progress for the first time with some symptoms.

John tends to be cautious, though we like him very much. We purposefully made an appoinment with Dr. H after months of my husband's sliding and Dr. H took a more aggressive approach to his tx, putting him on lV rocephin and changing him from Malarone to Mepron as well as adding Septra and Andrographis. John listens well though, so I would think that if you really want to go back on Rocephin, you could get that across to him, even if you have to ask him to consult with Dr. H aobut it and don't want to wait another month.

The Cymbalta was prescribed by a local doc- I requested it as I was experiencing some anxiety and depression. I wasn't sure if it was related to menopause, lyme or just general biochemical imbalance.
I chose Cymbalta because it helps with pain along with anxiety and depression and doesn't have tinnitus as a side effect. As a psychotherapist, I'm very familiar with different medications. When I told John about the Cymbalta- he said he likes Cymbalta a lot. It was wierd though- when I upped the dose to 40mg(my doc was going to have me increase to 60 mg) my body got numb- so numb that I had an accupuncture treatment and couldn't feel the needles! So I decreased to 20 and it seems to be working. John agrees that the lowest dose that works is generally best to go with. Anyway- I've found it to help tremendously with energy and overall wellness of mood.

I hope your appointment Friday goes the way you want it to. Take care,

Leslie
Posted 11/11/2008 8:36 PM (GMT 0)

Hi Leslie- Thank you for all the information. My doctor here in NH is agreeable to me going back on the Rocephin so I am sure I could have him write the prescription and set up the Picc insertion. It was just that talking with Dr. H the last time I was there he doesn't seem to think that his patients do well after coming off Rocephin. It was the only time I felt well and I am willing to give it another try maybe with some different abx added. I can't give up at this point.

The Mino/Zithro is making me very tired but not herx tired. I have very little energy again and feel as though these are just side effects and not really doing much else. I think I am starting to become depressed also because of the backslide etc. and thinking I should try something. That is why I asked about Cymbalta. I am real sensitive to alot of medications and have had some bad problems with some so I am really cautious about what I try.

John did want to make sure I made an appt. on a day when Dr. H is in the office so hopefully he will be in on Friday. I will keep you posted on what happens. Take care..

Kim

Posted 11/11/2008 11:50 PM (GMT 0)
ktp812, sorry your not feeling well. so your see DR.h this friday? i hope you can get back on the rocephin soon. -:)
Posted 11/12/2008 12:43 AM (GMT 0)

Thanks kendal! I think most of it is side effects from the mino/zithro. As soon as I try to up the dose to what it is suppose to be I can't tolerate it. Dr D is all for the IV so hopefully Dr. H will agree. Hope you are doing well..I will keep you posted.

Kim

Posted 11/16/2008 3:34 PM (GMT 0)

Hi Kpt812

  I am sorry to hear you are doing so poorly . I can recall a bout with the Bart now almost 20 years ago after seeing some pictures and the doctors calling it excema which I knew it probably was not I also had the heel pain with it and gastronal problems alond with cysts on my ovaries and high white counts in my blood stream without a cause which the doctor at the time gave me low dose antibiotics for about 6 months which seemed to clear it up . I also had cysts in my bladder removed at that time and all kinds of other unexplained issues .

 I also have made a major slide back since the IV stopped . I also tried the bicillian shots and couldn't even think any more . I am on cipro and minoxiciclyn and still feeling like crap . Nerve pain achy joints depressed and angry and frustrated.

Boy what a roller coaster ride and it also burns out everyone around me which I feel badly about. The pain is never ending and I have very few good days anymore . I go back to NYC the 4th of dec and will talk to the doc about all of this .

I hope you are doing a little better today . The rainy weather has been really making my hands hurt awful.

Take care ryebeach

Posted 11/16/2008 11:47 PM (GMT 0)

ryebeach-

I am sorry you are not feeling great either.  I am going back on IV as soon as they can get the line in. I went to see Dr. H on Friday and they decided that would be the best for me. They told me it was going to be very aggressive with pulsing Rocephin and Zithromax. I am looking at a year at least. He said if I was willing to go on IV again then they are going to hit it hard.

I am going to have a port since I will be treating it for a longer time. I don't think my arm could handle another Picc anyway. I am excited and nervous at the same time. I pray that I will have good results again. Orals just don't work for me at all. He told me to stay on the Zithro anyway for now and to stop the Mino. He also thinks it is possible I was re infected since I now have a positive Babs titer.

The constant exhaustion is the worse for me. Plus I am having problems with my right calf now too with the electrical current sensations and pain etc.. I will let you know what happens. I am calling my doctor here in NH tomorrow since he is the one that has to set up the appt. for the port.

Keep in touch and let me know how things are going. Hopefully you will have a good appt. on the 4th.  Take care

Kim

Posted 11/18/2008 10:06 PM (GMT 0)
Hi Kim

  I am glad they decided to do the Rochephin for you again . Maybe you could let me know how it works with ordering it from your prescription plan . It is awful that you may have been reinfected again. Sometimes I wonder if I have been as well. This summer I took no enjoyment in working in my flower garden and spotted quite a few deer ticks near them . One was crawling near my neice and I was freaked out swooped her up and really fear for the young kis playing these days.

  I ran across a daughter of a lady at a lab draw that lives in my town directly across the highway frome about a mile  also with nuerological lyme just now going for an appointment at a infectious disease doctor after 4 months or so on orals but not doing well . It is really sad that the drs still are debating even to themselves as the rhemotologist told me today he was on the fence. I mentioned maybe he should get off the fence wake up and realize that the sooner the drs catch this the better off people will be instead of this horrible life we exist in. I think I struck a nerve since he asked me for info and I offered to bring him in the movie that he hyad mentioned to me .

I let him know it was like watching me but with other faces and I was not real happy about how long we all have had to battle this.

Hubby needs to look at something online so got to go. Manchester group is tommorow at 6 oclock or 6:30 I will be going this time even if it for an hour or so since I have a hard timje driving in the dark.

Laconia is next saturday after thanksgiving

Good luck with your port and keep me updated

Renee

Posted 11/18/2008 10:42 PM (GMT 0)
Hi Kim,
How are things going with getting things lined up for the rocephin, zith and port? Am wondering about the prescription plan that you referred to- does it cover the rocephin? Insurance just denied my husband's treatment beyond the 28 days and we need to explore all options. He is actually just beginning to show improvement after 4 weeks so there is no way he's going to stop treatment. Through Dr. H we can order the rocephin for about $600 per month- talked with Sonya there today. But insurance runs out tomorrow...we're going to appeal yet not hopeful.

Just had my first big cry about what a fight this illness is, how much it has taken from us and what a political struggle and cost it is to get treated. it's exhausting.

Thanks,
Leslie
Posted 11/19/2008 12:31 AM (GMT 0)

Hi Leslie,

  I saw your post about the insurance denial . Sometimes from what I hear your prescription plan is seperate from your medical so I would maybe explore that further. There is a group in Ca that can send you info on appeals . Try and check it out. First try to get the doctor to write a Medical nessesity letter and explore everything before removing the port or picc because if they do cover it through your prescription plan they will not pay to put the picc back in .

The insurance did this to me also . Some people do win . There is a women in NH that did after winding up in the hospital fo 30 days or so. Oral cipro works not too bad but not as well as Rochephin as far I have seen with me.

Today is not so bad . Last week was miserable and painful .

Good luck and I will keep your family in my thoughts

Ryebeach

Posted 11/19/2008 12:52 AM (GMT 0)

Hi Leslie-

I sent a fax to my doctor yesterday letting him know what John had decided. I have not heard from them yet. If I don't in another day I will call them. I am not sure if he wants to talk with John first or what is going on. I would like to get an appt. to get it in. I am feeling miserable. I am still suppose to be on the oral Zithro but it makes me so tired. Not that I really need any more fatigue in my life.

I was also denied after 28 days and John wrote a letter and got me another month. It was a very detailed letter but didn't do much good.  Then I was cut off so we do order it through our prescription plan. You can try and do that. We have United Health Care and we only have to pay the co-pay which is very cheap. It comes in a powder form in vials and we are going to mix it with saline. In fact I already have my first 30 month supply now all I need is the line.

We didn't have to mix it last time because we have a friend who works for a IV company and we would bring him the vials and he would mix it for us but this time we will do it ourselves. We need to find a company that supplies the IV lines and syringes for the Rocephin.

I am very happy to hear your husband is feeling better. I think it took me about 5-6 weeks and after that it was pretty fast. It is so heartbreaking to know how good I felt a year ago on the IV and now I am doing so poorly again. John said that relapses happen and it doesn't matter what you are taking.

I will keep you posted on when I am getting the line etc. I hope you have some luck with your prescription plans insurance. Call your pharmacy and they can let you know if it will be covered. It is exhausting trying to get long term treatment. I just feel extremely lucky that I have been able to go back to IV because I honestly feel it is my only chance to get well. Take care..

Kim

Kim

Posted 11/19/2008 1:06 AM (GMT 0)

Hi Renee-

When you were on IV did you have Zithromax too? I thought I remembered that you used a couple different abx. I am having such a terrrible time with Zitro and tiredness. I am afraid to do the IV Zithro if I am having this much trouble with orals. I can really say that oral abx have not touched any of my symptoms. I don't think I was re-infected. I think taking the Malarone caused the test to turn positive. I really think I would have known if I had been bit..but again I didn't know the first time.

I have not heard from Dr. D yet. I sent a fax yesterday and explained what Dr. H wanted to do and for him to set up the appointment. I will call in another day if I don't hear back. The trip to NY was very tiring and I am paying for it now. It is horrible how the doctors don't want to even talk about Lyme never mind treating someone. Whenever I go for my physical my doctor doesn't even mention it or ask how I am doing. The first time I told him I had Lyme he asked to see my red/swollen joints. I told him I didn't have that and he said well then you don't have Lyme. They are totally ignorant when it comes to this disease.

My prescription plan will cover the Rocephin. That is how I was able to stay on for 6 months earlier this year. We just have the co-pay. It doesn't come mixed just in the vials in the powder form. We will mix it ourselves. We have to find a company that we can buy the supplies from. It is strange but the insurance will pay for the visiting nurse to come once a week but not for the Rocephin. Makes sense huh??

I just really can't make the support group. The fatigue has been awful lately and I can't drive well at night. I would be dangerous on the road..I will keep you posted on when I can have the line in etc. If you make it to the support group please let me know how it was. Take care

Kim

Posted 11/19/2008 3:42 PM (GMT 0)

Hi Kim

  The Guy that runs the support group's name is Dave . He was originally from ct and came to speak at the meeting in laconia .  His daughter had very bad nuerological lyme in her early teens and missed some where around 3 years of school with it but is now in college but still suffers from sleep disorders from it . He is very knowledgable and had created a group to go to the legislators in Ct and has been very involved for at least 8-10 years.

  Did I tell you we went to sign the Proclamation declaring Lyme awareness month of may in NH . I could not believe how much taller us girls were than govenor Lynch .It was in the paper at the end of may . He was very attentative to our concerns and showed a little shock of what was happening around here. His wife is a doctor I believe . Dave the guy from the support group on wednesdays  said I spoke well and addressed the issues so that he believed Govenor Lynch had listened . The media guy from the govenors office emailed us the photos that were in the paper that had showed the signing .

T.  the IV pharmacist is a nice person .

He was mine for 19 months .

I hope you do better when you get on the rocephin . The IV Zithro did not make me feel ill like the orals did. I know at the time it took the dr a little coaxing to convince me it wouldn't bother my stomach like the orals They mad me heave really awful . I was really concerned it would. It seems like it takes forever to drip from the bag . Sometimes up to 2 hours. I had to do it twice a day . It worked better when you could leave it at room temp for a few hours. I felt like preparing and admin sucked up my whole day but I felt better in my joints while I was on it and the nerve pain improved . I was having a hard time taking a shower without feeling like I had hives for the next 15 minutes afterwords /without the rash for almost a year and a half before the zithro IV .

I also went through 3 1/2 months of IV doxy but could not afford to continue . BiCillian shots for 14 weeks after that but they didn't work well at all for me either.

Well have to go for now

Take care

renee

Posted 11/19/2008 4:43 PM (GMT 0)

renee- When I am feeling better I will definately try and make the support group. It would be great to hear from other people that are suffering from this disease. I don't know anyone personally that has had this. I am kind of shocked that no one else on my street has come down with it. I mean we all live in wooded areas with deer roaming around so I am surprised.

When I was out in NY last week the PA I see was saying that the term persistant lyme is being used. I think maybe the CDC is starting to change their minds. I just wish we didn't have to fight for our medications. I think it is great you were at the signing of the proclamation for Lyme month. When I am better I am going to find a way to become more active. I just don't have the energy right now. The fatigue is a killer most days..everyday is different but it makes it very difficult to plan things.

I had a terrible time on oral zithro. I am not sure if it contributed to the tiredness or not. I really had no stomach problems with it as long as I took it with food. I just want to do this whole IV right this time so I don't have to go through this again. I still haven't heard from my doctors office so I guess I will have to give them a call. Okay I am going to try and get some things done today..I am so so tired.

Keep in touch..

Kim

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