posted
I saw a message about another person in this situation but she had different questions and I didn't want to take it away from her, so I started a new topic.
I was misdiagnosed for 4.5 years, was treated with oral abx for almost 2.5 years, then a break of 3 months and orals again for 8 months and IV Rocephin for 3 months.
I saw a local LLMD for the first 3 months, then traveled to an LLMD in MO for the next two years. During that time, I went through a different oral abx each month because I was only supposed to stay on one longer if I felt it was helping me. At this rate, I took a new one each month until I finished the list. He said it was time for IV abx but he couldn't prescribe them unless I lived there. So I had to find a new LLMD.
The local LLMD would have done this based on the recommendation but he had a heart attack and died the night before my appointment. I finally got in to see an LLMD 2.5 hours away, and he wanted me to try more oral abx first, so I did. None of them made a difference so he started me on IV Rocephin last November. I had 4 days where I actually felt better, then nothing after that. After 3 months, he stopped it. Now that he has been seeing me for one year and I have not shown improvement he does not want to see me anymore. He says he can't help me.
I have permanent damage in the way of arthritis all over and neurological damage. My spine is of a very old person and I need knee replacements (but I am too ) among other surgeries, which I can't have because of brain involvement (my uncle had Lyme in his brain, had knee replacement surgery and came out of it violent and not knowing who anyone was - he was just gone). Nerves don't grow back and arthritis doesn't go away. But I was hoping that further progression could be stopped, I could get my brain back and I believe that the "fibromyalgia" symptoms could go away. I think that is the best that I can hope for but with all of this damage I wonder sometimes if it is even worth it.
I need to see someone who deals with very difficult cases but the problem is the same one that I ran into with the MO LLMD - that if I am not local, only certain treatments are available to me.
We don't have much money but I do have decent insurance for now. The problem is that I can't afford to actually move somewhere, or stay in a hotel indefinitely. I would like some ideas about what to try or if there is an LLMD who might be able to help me.
Thank you for your suggestions.
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Have you ever tried Bicillin? A family member can be trained to give you the injections, or you can get them at a doctor's office.
If you still want to try treatment, that is what I'd recommend just based on what you've said so far, though I'm not a doctor, and I don't have all the info.
How long did you take Rocephin for?
Keep in mind that Bicillin is a commitment, and often you won't start to see any progress until somewhere between 3-9 months.
However, I have found it not too damaging to my body, like some meds can be. If you can handle the injections themselves.
Have you ever tried Tindamax? That has helped some people with fibro-type symptoms. But overall I'd recommend Bicillin if you haven't tried it. Remember it's a committment...it works extremely slowly, but when it does work, it really works.
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
There used to be a poster here (CaliforniaLyme) who said it took her 7 months on IV rocephin before she got better. Don't give up!
Hoos has a good idea! You may also be able to try IM ceftriaxone although that can be hard to take because it sometimes causes painful lumps at the shot site. I took IM ceftriaxone (generic rocephin) for 6 months and my all over body pain of 9 years (diagnosed as fibromyalgia) improved by 70%! I never thought that would hapen!!
6 months after stopping IM it started to come back. I keep it at bay with anti-inflammatories. It's way better than when I started IM ceftriaxone. I'll eventually end up on IV.
There are LLMD's who will treat out of towners with IV but it may depend on the laws of your State as to whether they can or not.
I'm sorry you are in such a situation where you can't get the help you need in your State. I'm in a similar situation and must go out of State to get help.
I'll PM you with a name. You may also want to PM METALLIC BLUE. He has a list of LLMD's and he may be able to help you figure something out.
Best of luck, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Maybe I missed it but I've seen no mention of co-infection testing or treatment. That may well be why you aren't improving.
Some of them need a clinical diagnosis. Both my babs and bart tests were negative yet I developed the long streaks when I started treating lyme. Some of my best improvement has been with treatment of babesia.
Maybe that is the real issue or perhaps it is that you need a toxin binder. I see in another post that someone has already mentioned that to you.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I am on year 21 of illness. It was only in the past year that a PCR test found lyme. I also had other diseases found at that time. All these years I was treated for CFS, was bedridden many of those years with serious neuro.cognitive issues.
I have been on the Bicillin shots for 5 months and they are definitely helping me. I go to a doc who is past president of ILADS and a top expert on lyme. He does not accept insurance, but will work with you by telephone after one visit, I believe.
His office staff is wonderful and has given me lots of help. We feel that he is worth every dime we spend with him.
You may PM me if you would like more info.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
2 comments --First, as Terry said I would suspect coinfections, but the one that comes to my mind is bartonella or BLO or mycoplasma -- all treated with similar meds.
2nd comment -- it sounds as if you have only been treated with one antibiotic at a time. For many people that is just not enough -- you may need a more aggressive antibiotic combo. But you need a very experienced LLMD to supervise this.
3rd idea -- have you tried something like the Buhner protocol. That is something you can do yourself -- while I feel it works best with antibiotics I do think it is a good starting place to lower the infection load and maybe figure out which coinfections are involved.
Hubby has had IV Rocephin and 2 courses of IV Primaxin -- but he still herxed from the herbs. And if the dose is high enough certain herbs such as cryptolepis tincture and stephania tincture do cross the blood brain barrier.
You say that the antibiotics did not help -- could you be more specific? Did you have any herx type reaction at all or just continue with the same or worsening symptoms with no real changes?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I did not know that=I guess I would have to sell off more of the farm and find a motel room to live in a while.
-------------------- 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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
TWO YEARS and just one Abx at a time even when stating how ill you are/were? I'm sorry, this just really bothers me to hear this stuff. I keep hearing it over and over too. The problem is sick people can't judge if something is 'helping them' like we should. Sometimes help may be after a nasty herx which we mistake as drug side effects or something more. Patient freedom is nice, but dangerous too IMO.
Now I don't know if you had trouble tolerating drugs and that's why, but I'm guessing if you're considering IV and was able to rotate through his massive list of choices, you had some ability to tolerate them.
Isn't there just some times a doc says it's time to take a risk? I'm no drug pusher, but there's a disconnect for sure.
quote:Originally posted by lucecaboose: I saw a local LLMD for the first 3 months, then traveled to an LLMD in MO for the next two years. During that time, I went through a different oral abx each month because I was only supposed to stay on one longer if I felt it was helping me. At this rate, I took a new one each month until I finished the list. He said it was time for IV abx but he couldn't prescribe them unless I lived there. So I had to find a new LLMD.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I forgot that I put a message here! Thank you for your responses.
What I didn't write above was that my LLMD was giving it one last try and if it didn't work, he's kicking me out. He wanted me to take a small dose of oral doxy to see if I had an allergic reaction, and if I didn't, I could get IV doxy.
He knows that oral doxy was the first thing my first LLMD tried with me almost 3 years ago. At that time, I took doxy for two months with no change. And it made me so nauseated, I had to take Zofran with it, and that only helped for part of the day.
So with the current LLMD, I tried the small dose and I had nausea, but not as bad as the higher dose had been 3 years ago. Still, I had to take Zantac and cola syrup to handle it. I didn't even take it the entire time because it still messed up my stomach.
When I saw my LLMD again, I told him that I had no allergic reaction. He said that IV Solutions didn't have any IV Doxy, but would be getting some. In the meantime, he upped the dose! I told him that it bothered my stomach so he prescribed Prevacid. Prevacid doesn't even work as well as the Zantac he knows that I take, and I am back to Zofran and getting sick. He also said that if the oral Doxy helped me, I could take that and would go on IV Doxy.
My nurse is afraid that IV Doxy will make me just as sick. I thought it had to do with taking the drug orally, but she said not necessarily.
Doxy is the last thing, then I am gone. He doesn't want a patient who doesn't show improvement and who has some allergies to some antibiotics.
I never had allergic reactions to antibiotics until last summer. My current LLMD tried me on bicillin injections and after the 3rd one, I broke out in an itchy rash. After that, I broke out with the next 3 (oral) abx I tried! I stopped for 3 months and then tried one of the abx that had given me a rash, and I was fine.
I had something like this happen after my hysterectomy. All new medications, like all ERT and even a simple stool softener made me break out in an itchy rash. After a few months, I was fine. So it wasn't really an allergic reaction. But that's how my LLMD saw it.
--------------------------------------
My LLMD won't do more IV Rocephin, but that's really good to know that someone was on it for 7 months before improvement. You think that IM ceftriaxone will work if IV ceftriaxone didn't (in three months anyway)?
I've done the Pat Kane detox and currently take Chlorella, glutathione, sometimes activated charcoal but am afraid of chitosan. The only LLMD that tested me for coinfections was the 3rd one, but it wasn't done with Igenex.
I will have to finish reading the rest of the messages later because it takes me SO long to do anything, especially when it involves writing (due to lyme). Again, my apologies. I came out here to post a similar message and thought I'd better check to see if I already had. I was a little surprised. Thank you so much for your help.
p.s. I glanced over a few more and saw that someone said that one at a time oral abx wasn't aggressive enough and I absolutely agree! I thought I WAS seeing someone experienced with the 2nd LLMD. He is someone that so many people here swears he walks on water. Someone here referred him to me. He gives everyone the same treatment regimen. My 3rd LLMD is very popular in my state...very well-loved and has helped so many. SIGH.
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
lucecaboose - What a saga! My word! Listen, post a thread over in Seeking A Doctor portion of this forum and see if someone can find you a MI LLMD. That way, you're more likely to get IV tx. Also, contact your local or State LDA Support Group; they have LLMD list.
You definitely sound like you need tx for co-infections, even if you don't test positive for any of them. I tested negative on all co-infecs, but when my old LLMD tx'd me anyway, my condition improved dramatically.
Best to you. I know you're in pain and losing hope, but don't lose hope. Post the thread in Seeking A Doctor ASAP!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
Please ask your LLMD for Doryx, which is coated Doxy. It should NOT disturb your stomach.
Doxy itself I could not tolerate AT ALL, and had no problems whatsoever with the Doryx.
Nancy
Posts: 1487 | From New England | Registered: Oct 2000
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posted
lucecaboose, have you ever tried IV tigecycline? my new LLMD says it's the strongest thing for lyme.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
We have very limited llmd in MI. There is NO llmd here that imo can treat a complicated case. Sad, but true.
Posts: 323 | From Michigan | Registered: Sep 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I agree Marcie. You gotta run out of MI for good care. NY is the place.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Don't believe everything you hear about late stage Lyme. Your body is more ill and saturated with bacteria than some but it is a bacteria that can be killed.
I have had this conversation with a couple of LLMDs and one researcher. It can still ALL be killed with antibiotics if you treat long and hard and smart enough.
Many people get cured after being in horrible shape...some had go to war for a long time.
Not all LLMD's and patients believe in "remission" instead of cure.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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posted
Thanks again, everyone. I have several cognitive issues and sometimes, I can't read, and sometimes I can read but have no idea what I am reading, so it's been awhile.
LLMD #1 gave up right away. Someone here recommended LLMD #2, and I did travel out of MI for him - we drove to MO every 3 months. He was highly recommended by many here and is considered one of the top LLMDs, so I thought I WAS seeing someone good. I have to be careful because he has many loyal followers here and I don't want to step on any toes.
As I said, he tried me on 1 abx at a time and said that certain ones were for certain coinfections. None of them made a difference, so I was only on 1 a month, which is what he does with everyone. You take 1 for a month and if you feel better, you stay on it. If not, you move to the next.
After I took everything on his list, the next thing to do was IV abx but he wouldn't prescribe them unless I could see him weekly. I couldn't afford to move there, not even temporarily.
My current LLMD tested me for a few coinfections but only through Quest labs, not through Igenex. They were negative. He is also very well-loved here, but every time I go, he changes his mind about what he wants to do with me. He doesn't like to do IV and I don't blame him. He wanted to take me off IV Rocephin after 2 months because I didn't feel better the 2nd month. I talked him into the 3rd.
But he did prescribe IV Doxy and I have been on that for a little more than a week. I see him this Wednesday. I don't feel better yet. As far as I know, I have NEVER herxed. I feel crappy and really crappy depending on the day, but abx don't change this.
I'm glad he's trying this because funds are limited (and I will mention some things that you guys have said). But unless I just want to give up, I have a feeling I will have to see someone who can treat difficult cases. If Doxy doesn't work, he's referring me to some infectious disease specialist in Detroit, but I can't waste any more time if this guy doesn't treat difficult cases, either.
Thanks for your help on this...I figured I would have to go east. I just want to make sure that it is the right doctor. I can't mess around anymore.
I already have permanent damage. But I'm still hoping that I can get rid of the rest of my symptoms and stop the progression of the others.
Anyway, I'll post a message in Seeking a Doctor for someone outside of MI. The only problem with that is I will just get a name or two but won't know what others think of them. I can't mess around now - I don't have the time or money at this point.
Thanks everyone.
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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posted
Three weeks ago, my hives started again, the way they started last summer. At the same time, I learned my insurance was ending and that I would have to buy my own. So my 3 months of IV doxy stopped two weeks ago. I thought it might have started helping me, but for the past week, I've never felt worse.
I see in the beginning of this message thread that a couple of you mentioned good LLMDs that I can see out of state since no one here is aggressive enough. I will send you PMs and thanks for your help.
My husband has been out of work for almost two years, we have 2 daughters and I am on disability so if I am going to pay a large price to see someone, I need to make sure that it is the right person this time.
I thought I was seeing one of the great specialists a couple of years ago but he did nothing for me. A leading member of lymenet sent me a message string that was full of praise for him. I think he helps a lot of people, but his treatment plan of one abx at a time for one month doesn't help everyone.
This is why I need to be sure this time, that it is someone who will look at my situation and not just give me the same thing he is giving everyone else.
Posts: 43 | From Grand Rapids, MI | Registered: Aug 2007
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quote:Originally posted by migs: Don't believe everything you hear about late stage Lyme. Your body is more ill and saturated with bacteria than some but it is a bacteria that can be killed.
I have had this conversation with a couple of LLMDs and one researcher. It can still ALL be killed with antibiotics if you treat long and hard and smart enough.
I agree!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
This thread has my head spinning. I am currently not receiving any medical care for my late stage Lyme.
I was on low dose Doxy for 4 weeks. Last week, I believe Tuesday p.m. was my last dose. Friday a.m. I was shaking, pulse was 120, I took my BP and was 100/90 in left arm twice. During my taking the abx. I became worse, dizzy, losing my balance, cognetive probs. etc. Friday when I tried to walk it felt like the gravity was pulling me to the left. As hard as I tried to walk straight, I walked to the left.
I had someone coming to my house for an appointment and she immediately said I needed to go to the hospital. She called a friend of hers that was a nurse and I talked to her on the phone and she ask if I always slurred my words. I said "no".
My appointment person also said I was slurring my words. FINALLY, I said ok and they called 911. I was an EMT for 6 years and should have known better than to wait, but I did.
CT came back normal. ER Dr. said "This doesn't have anything to do with my Lyme". I know that it has everything to do with my Lyme.
The only thing he found wrong was my Lymphocytes % was very high??????????????? Wrote me a script for Valium which I shredded when I got home.
Here I am...waiting for the Infectious Disease Dr. to call me back (From LAST week). Depressed. I do not want to go on. I cannot handle the stress in my life. I have no will to keep fighting this and I have only just begun.
I am going to send you a PM regarding your LLMD Dr. in MO. I live in St. Louis, MO. The ONE I have called, finally returned my call after 8 days and I was not home. On my message I left them I ask them to please call my cell if unable to reach me at home. They did not.
Since then I have read more about him. I hear he is the BEST, however, there is NO WAY I can afford him and I haven't called the one in Kansas City, MO.
I'm lost and feel like I am just going to have to die from this because no one will help me. (Your symptoms are not from your Lyme). YES THEY ARE!!!
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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![[Frown]](frown.gif)
The problem is sick people can't judge if something is 'helping them' like we should. Sometimes help may be after a nasty herx which we mistake as drug side effects or something more. Patient freedom is nice, but dangerous too IMO.![[Smile]](smile.gif)
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