Alright, as some of you know from reading my post "Almost Nothing Has Worked" you know, well, that very little has worked. The primary thing that did help turned into a disaster, and that was IV Vanco in 2005. I felt much better, but the risks and consequences were high.
Update: MSM did not work, nor did additional cycles of Tetracycline. The infection has adapted.
Rife therapy with the EM machine was a failure after over 100 sessions (carefully documented HERE)
I've tried to get my hands on a Doug Coil, but I just can't wait anymore and I'm receiving pressure from family and friends (rightfully so) to attempt the IV more thoroughly. So.....
It's time to move to the IV. I've decided to return to Dr. D in Boston, given he and I discussed and previously worked on using IV antibiotics. I had not returned to the IV for a lot of reasons, 1: Trauma from the last septic process that nearly killed me, and 2: I felt I hadn't explored the lower risk options, although those lower risk options had almost no science to support them, the risk to benefit was appropriate at the time. I've dealt heavily with Co-infections under the care of Dr. H in NY, but Dr. D is affordable, takes my insurance, is willing to write the scripts after thorough debate and planning, and my primary at home will now be fully in the loop and capable of providing local care if anything goes arong. I also have a surgeon on hand for any line/inserts.
Now, it's IV time. I'm performing a number of activities and need your help:
1: Retesting via Igenex, complete panels for Lyme 5060, and the full Co-infection panel, as well as Bartonella Fish and Babesia Fish, and the CD57 that they now offer. 2: Local Retesting of blood work, including viral, bacterial, parasitic, fungal, and other forms of infection.
I need help choosing which tests to run through my local lab, including immunological testing, Gene testing or anything else that might be pertinent to giving me information.
Here is what I have listed so far:
Igenex
6050: Lyme Disease: Includes IFA, IgG and IgM Western Blots and PCR (whole blood and serum):
5090: Babesia, Ehrlichia - Anaplasma phagocytophila (HGE) or Human Monocytic Ehrlichia (HME), and Bartonella. IFA antibody tests: Babesia microti-#200, Ehrlichia: #203 Anaplasma phagocytophila (HGE) or #206 Human Monocytic Ehrlichia (HME), Bartonella - #285 and Babesia FISH-#640.
CD57 Test - It is expressed on both, natural killer (NK) cells and T lymphocytes.
Regular Lab:
Ehrlichia, Ehrlichia serologies & PCR
Bartonella Hensale & Quintana, Serological, cultures, or PCR
Tularemia, Serologies
Rocky Mountain Spotted Fever (IFA) & PCR
Relapsing fever serologic testing
Chlamydia Pneumoniae Serological testing & PCR
Mycoplasma Pneumonia PCR
Mycoplasma fermentans PCR
Toxoplasmosis polymerase chain reaction (PCR
Babesia Microtic Smear Serologic testing for antibodies against Babesia (both IgG and IgM) & PCR
Babesia Ducani Smear, Serologic testing for antibodies against Babesia (both IgG and IgM) & PCR
Viruses:
Cytomegalovirus CMV pp65 antigenemia test (IFA) and PCR & ELISA (Or IgG, IgM)
Human herpesvirus 6 & 7 (PCR or Serology)
HSV 1 and 2 IgG and HSV 1,2 Screen, IgM, EIA Antibody levels. If the HSV 1,2 Screen, IgM, EIA is positive, an HSV 1,2, IgM, IFA
Colorado Tick Fever (CTF) complement fixation & IFA
Epstein�Barr virus Serologic & Mono Spot
Coxsackie A and B (B more important) PCR or Serology
Immunological:
Cytokines IL-6 and TNF-alpha
chemokine CXCL13
Endocrine:
Testosterone: total testosterone with sex hormone-binding globulin (SHBG)
*What "specific" tests should be done for the Endocrine system or any other recommended tests? I.E. Serology, IgG/M, Smear, etc.
Information on IV supplies
I'll also need information on what type of IV line will be most effective for reducing complications. I do want to continue working out if possible (Biking) with the line, but I'll give up things if necessary. I'm thinking a chest port may be most appropriate, but I'd like to know what tools I'd use to cover it and protect it. I'd like to know the details about how it's maintained, who deals with it (nurse?) what, who, how, why, when, where basically.
IV Formulation Combinations
I'll then need help formulating an IV combination therapy that will be most potent based on my prior response to medications. I responded very well to Bactrim, Vancomycin, Tetracycline, Doxycycline and Malarone.
That's all I have to go on. There are still many drugs I have not tried, or drugs that work differently when taken via IV verse orally. So, combination therapies? Where to begin?
I'm not concerned about Detox and all the other supplements surrounding this process. I already know what to do on those fronts.
Additional concerns are that I developed bad allergic reactions to Vancomycin and "probably" Bactrim. So I need alternatives that work on the same mechanisms of the bacterium while using a different drug if possible, or combinations.
[ 07-05-2011, 03:02 PM: Message edited by: METALLlC BLUE ]
Posted by springshowers (Member # 19863) on :
Have you considered finding an integrative clinic / doctor who treats lyme disease but evaluates your whole body and treatment is inclusive all of the findings and needs. Then your whole picture will be evaluated and not just lyme or co infections and since you have been at this so long and so much then an overall perspective from some place and even team of doctors might prove to show up some things not addressed that could be key?
Just an idea...
Posted by seibertneurolyme (Member # 6416) on :
Metallic,
I have some ideas, but first, what infections have you tested positive for in the past?
Bea Seibert
Posted by Tincup (Member # 5829) on :
Just stopping in to thank you and tell you what a wonderful document you've made on chronic Lyme. I just used it to assist someone with another insurance problem.
Your work is valuable and very much appreciated!
Thanks so much!
Posted by seibertneurolyme (Member # 6416) on :
Metallic,
Might be a good idea to review the slideshow Tincup posted -- thread titled Strategies for Treatment of Lyme. A very good summary of IV meds -- some I wasn't even aware of being used for lyme.
Another point to be aware of -- you may not get the same response to the same IV meds you have used in the past. As time passes and your particular mix of bugs changes it can cause differing reactions to the same meds.
Hubby tried IV Rocephin in 2003 -- the response was so much different in 2010 after he had treated bartonella and hopefully got rid of that bug.
The first time around I had to stop almost every single IV at least once to give IV Ativan for seizure-like episodes. This time that did not happen even once and he was on the Rocephin for 7 months rather than just 2 months as happened the first time. And for the most part improvements have not gone away as they did the first time in 2003 beginning within a week of stopping the IV.
Adding in IV Zithromax just made things even better.
But later IV flagyl started a downhill spiral that hubby is still struggling with.
Even if you have done oral tindamax I don't think that even begins to compare to IV flagyl -- but I do feel that someone with very longterm multiple tickborne infections probably needs the flagyl if it can be tolerated.
Hubby would actually like to try the flagyl again if we can find someone willing to prescribe it. But if you have any babesia hiding out then that could come out during the flagyl treatment and any other intracellular bugs as well if the die-off is significant.
Hubby still can't say for sure where the serratia marcescens came from and we are not sure that it is really gone as he continues to run low grade fevers of 99.5 most days -- most days since March 25. His WBC has been normal for 2 weeks in a row so at least that is encouraging. Will just have to wait and see how he does when the most recent 30 days of cipro for the serratia runs out.
Personally I don't think any of hubby's docs have ever come up with a treatment plan which lasted more than a month or two -- there are just too many variables.
It would really be nice to say that you should do xyz meds for x number of months and then abc meds for x number of months etc. But it never seems to work out that way for hubby -- he generally knows within a week or two if new meds will help or not and then we spend the next 2 or 3 weeks trying to come up with a new plan for the next doc appointment.
I hope you can come up with a reasonable plan, but don't be surprised if the initial plan gets modified many times before you are done.
Personally as far as testing I would also include a Clongen bloodslide. Would also do the ECP (eosinophil cationic protein) test as another indirect test for babesia and bloodborne parasites.
Bea Seibert
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by seibertneurolyme: Metallic,
I have some ideas, but first, what infections have you tested positive for in the past?
Bea Seibert
The Post "Almost Nothing Has Worked" covers that. And as for Spring's suggestion. I worked with Dr. H in NY and he's seriously integrative and a very aggressive treating physician. He hits everything from heavy metals to thyroid, adrenals, to a long list of other things.
The lost Almost Nothing Has Worked has documented my case the entire way, and the bottom-line is that I need a big picture of specific tests, for multiple factors so I can paint a picture which is fuller.
I've done exhaustive research on cross referencing studies for Fibromyalgia and Chronic Fatigue Syndrome as well as studied every single published study so far on borrelia species, and have come to the conclusion that many of the studies overlap and thus if you understand the mechanisms of damage or symptoms from one condition, you can understand it with the studies from borrelia and associated co-infections.
I want to know how to treat my sleep disorder, my pain, my digestive problems, I want to see what exactly is causing what -- within the realm of limitations of testing.
I will only be using one local lab as of right now, so additional testing and labs can be recommended but I need basic testing right now that any lab can generally do.
I.E. Run a Western Blot, or Serology for Rocky Mountain, etc. Tests may be inaccurate, but if I test for a lot of things, the picture will show things. I've seen RMSF show up, EBV, abnormal Mold, abnormal Mycoplasma and a long list of things just with Quest. So, I'm going after everything I can think of. A lot won't be covered or the lab will not even be capable of performing, so the idea is to run whatever can be, and figure out the rest later.
As far as treatment paths. I'm going to plan out about 10-20 treatment protocol combinations so that I don't miss anything if plans change. I've been at this all my life and spent 10 years treating, so I know the pit falls of a lot of things, as well as successes. The IV gives the opportunity to revisit drugs that were previously ineffective, as well as try high potency therapies that were not tolerated but now could be.
I'm taking on a lot, so the stress is high. I'm doing what you'd call "Overkill". I believe this will succeed if I do everything correctly. I'm using Dr. Burrascano's guidelines as the underpinning for almost everything, and the rest from my own experience as well as ideas from people like yourselves.
I am much more confident than I was a few months ago.
Posted by METALLlC BLUE (Member # 6628) on :
Thanks for the compliment and for the additional ideas you've all given. Someone sent me a PM with the name of an infusion company that can help answer a lot of questions on that particular issue, so that's one helpful piece of data.
I realize a number of threads already exist where people make recommendations about arm bands, and extension lines etc as well.
Getting further insight will help me on that front. I believe the chest port is the better option in my case rather than the PICC, but I need to consider lifestyle and other factors. This isn't crucial at the moment since I have a lot of other planning to do.
Posted by canefan17 (Member # 22149) on :
Isn't there a school of thought that if "nothing has worked" you may need to treat parasites?
Posted by map1131 (Member # 2022) on :
canefan17, I finally got the school of thought!!!!!!!! Celebration
Parasites being ALL the bad guys as one BIG picture puzzle. I got it finally.
Yes, you can put a name to the bad guy but he's still a parasite and how am I going to get rid of the SOB???
Anyway I can learn. I'm not stupid. A little slow sometimes. But I eventually get it.
Thanks for all you do canefan17.
Pam
Posted by METALLlC BLUE (Member # 6628) on :
I added some additional testing to my list that I think may be valuable. Tell me what you think or know about any of these tests. Or, ask me questions if you have any about them.
Endocrine:
Testosterone: total testosterone with sex hormone-binding globulin (SHBG)
Many of these are recommended by Dr. Burrascano and I think it's crucial to understand what exactly is going wrong inside my brain that is causing such devastating problems with sleep, and other neuropsychiatric symptoms.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by canefan17: Isn't there a school of thought that if "nothing has worked" you may need to treat parasites?
I've treated Parasites. Furthe treatment or testing may be necessary of course. Any ideas of treatments or testing to help me?
Posted by map1131 (Member # 2022) on :
Try thinking of all the bad guys as a parasite.
Everylast one of them. Bacteria, virus, protozoa, nano, mold, fungi, the whole lot.
I was answering that question the same way last week MB. I might need to revisit that theory.
No doubt about it. C protein is a good one. It indicates inflammation in the body? Hum?
Pam
Posted by springshowers (Member # 19863) on :
Not sure how much you have looked into Mold and its issues that can keep people stuck and from being able to move forward on any front. You listed it in one of your positive tests.. And I am not sure if you have left where you live when you found out that or what you have done?
Posted by Tammy N. (Member # 26835) on :
MB - so sorry you have been struggling so long.
I'm sorry I haven't had the time to read through all you have written. But I wanted to share some thoughts in case these are some stones that you may not have turned over.....
- Heavy metal toxicity. Have you been tested and/or treated for this? As it turns out, after 15 years of searching, many docs, etc. etc. this is my CORE issue. This is often an underlying issue with chronic infections. The metals are so toxic to us that our bodies allow/encourage the growth of bacteria, viruses, mold, parasites, etc. to buffer us from the toxicity of these metals. It's actually these critters that keep us alive because the metals would otherwise kill us. Once the metals are removed, the infections can start being eliminated (I believe this happens by our own bodies naturally, as our immune systems are no longer burdened and can finally start working properly again.) Or if we need meds, they will actually work for us.
I am being treated out of Dr. K's clinic in Seattle. They immediately zoned in on this being my primary issue at the moment. Since starting treatment in April, I am already seeing progress. I'm having other issues (dental, etc.) that I am working on. And recently just started reacting to sulfur, which is needed to detox. So we've got to figure out how to work around that, but I am encouraged because I am seeing progress. None of the other genius docs in the past 15+ years ever looked at this issue for me. So much time has been lost.
- Mold - another huge issue. This is my other big issue. Who knew?? I and my docs were just so focused on Lyme and Co-infections, etc. that metals and mold were never even considered. I think it is these two things that brought me down. I finally feel like I am now in the process of getting my life back.
- Cavitations - since I had a wisdom tooth extracted in March, I fell to incredibly low depths. After searching for anwwers, I went to a great biological dental (a Dr. K follower) and he drilled tiny holes in my jaw, injected ozone and my life changed for the better THAT NIGHT. He pulled me out of the ditch. I'm still having some ongoing issues with the extraction site, but I'm still feeling pretty good. If he needs to do surgery at some point, we can. But at least he started with a less invasive approach and I saw immediate improvement. (Also, Dr. K says if there are cavitations, a patient cannot get well until it is addressed.)
- Amino acids - another biggie. I'm still learning about this. Taking one step at a time.
Gotta run. But wanted to share some thoughts. And to let you know I'm thinking of you and sending my best.
Tammy
Posted by MichaelTampa (Member # 24868) on :
One idea I heard recently on parasites -- liposomal artemisinin (or artemisinin with phospholipids) along with garlic extract powder put up anus at bedtime. Haven't managed to try this one yet but working on it.
I know that when I added EDTA suppository to my regimen of biofilm-busting agents (cistus tea, serrapeptase, ...) I got a lot of worms coming out in the morning for a couple weeks.
Posted by AZURE WISH (Member # 804) on :
I am too sick to read the whole "nothing has worked post" and i am sure you considered this already but i just wanted to mention that allergic/sensitivity reactions to foods can cause symptoms. and that the reactions are not always that easy to identify as being caused by something ingested.... and symptoms can overlap lyme.
..another problematic thing i am sure you already considered is leaky gut.
Posted by canefan17 (Member # 22149) on :
Metallic,
Go on Wormwood Combo (or parastroy) and do salt/c with it. (you could do this no matter what other road you decide to go down)
I know you said you did a parasite protocol... could you go into more detail into what you did.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by springshowers: Not sure how much you have looked into Mold and its issues that can keep people stuck and from being able to move forward on any front. You listed it in one of your positive tests.. And I am not sure if you have left where you live when you found out that or what you have done?
I treated Mold extensively after testing positive on the IgA. The levels dropped considerably with a long list of antifungal and mold therapies, but of course not one single symptom improved.
I'm starting to think my problem might be the Hypothalmic-Pituitary-Adrenal axis. A lot of my symptoms seem to stem from that area of the body that controls so many functions.
I'm going to investigate that and a lot of Dr. Burrascano's recommendations since that hasn't really been done enough.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by Tammy N.: MB - so sorry you have been struggling so long.
I'm sorry I haven't had the time to read through all you have written. But I wanted to share some thoughts in case these are some stones that you may not have turned over.....
- Heavy metal toxicity. Have you been tested and/or treated for this? As it turns out, after 15 years of searching, many docs, etc. etc. this is my CORE issue. This is often an underlying issue with chronic infections. The metals are so toxic to us that our bodies allow/encourage the growth of bacteria, viruses, mold, parasites, etc. to buffer us from the toxicity of these metals. It's actually these critters that keep us alive because the metals would otherwise kill us. Once the metals are removed, the infections can start being eliminated (I believe this happens by our own bodies naturally, as our immune systems are no longer burdened and can finally start working properly again.) Or if we need meds, they will actually work for us.
We treated this extensively with alternative and pharmacological therapies for over a year.
quote: I am being treated out of Dr. K's clinic in Seattle. They immediately zoned in on this being my primary issue at the moment. Since starting treatment in April, I am already seeing progress. I'm having other issues (dental, etc.) that I am working on. And recently just started reacting to sulfur, which is needed to detox. So we've got to figure out how to work around that, but I am encouraged because I am seeing progress. None of the other genius docs in the past 15+ years ever looked at this issue for me. So much time has been lost.
Sounds like our stories are the same basically. I'm sorry too that you've dealt with this bull****.
quote: - Mold - another huge issue. This is my other big issue. Who knew?? I and my docs were just so focused on Lyme and Co-infections, etc. that metals and mold were never even considered. I think it is these two things that brought me down. I finally feel like I am now in the process of getting my life back.
We hit this very hard.
quote: - Cavitations - since I had a wisdom tooth extracted in March, I fell to incredibly low depths. After searching for anwwers, I went to a great biological dental (a Dr. K follower) and he drilled tiny holes in my jaw, injected ozone and my life changed for the better THAT NIGHT. He pulled me out of the ditch. I'm still having some ongoing issues with the extraction site, but I'm still feeling pretty good. If he needs to do surgery at some point, we can. But at least he started with a less invasive approach and I saw immediate improvement. (Also, Dr. K says if there are cavitations, a patient cannot get well until it is addressed.)
Thankfully I've never had a cavity in my life.
quote: - Amino acids - another biggie. I'm still learning about this. Taking one step at a time.
Covered this extensively, unfortunately it didn't help me.
quote: Gotta run. But wanted to share some thoughts. And to let you know I'm thinking of you and sending my best.
Tammy [/qb]
Thank you so much for putting some additional ideas out there. Someone sent me a PM which covered a lot of therapies I think need to be done, and apparently this girl sees the doctor I was seeing previously.
She made me question whether I even want to see Dr. D based on the protocols she listed. They are hardcore protocols that I've been pondering in my head, so her PM struck a note. I need a physician willing to make this effort with thoroughness, but this has been a significant point of contention for me financially.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by AZURE WISH: I am too sick to read the whole "nothing has worked post" and i am sure you considered this already but i just wanted to mention that allergic/sensitivity reactions to foods can cause symptoms. and that the reactions are not always that easy to identify as being caused by something ingested.... and symptoms can overlap lyme.
..another problematic thing i am sure you already considered is leaky gut.
Yeah, I've got problems in this area and need to address them. The problem gets much better when the Lyme does, but as soon as inflammation comes back I get gluten intolerance, and all those other fun symptoms. Thankfully it's not "leaky" gut. It used to be though and it was terrifying to not be able to eat anything at all without having this strange allergic-like reaction to foods.
I know which foods instigate symptoms, but the problem is, when I remove them my symptoms may be slightly less but nothing substantial. I will investigate further though.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by canefan17: Metallic,
Go on Wormwood Combo (or parastroy) and do salt/c with it. (you could do this no matter what other road you decide to go down)
I know you said you did a parasite protocol... could you go into more detail into what you did.
I talked with Dr. H's office about Parasites a number of times and we treated using medications for Babesia, including Dr. Zhang therapies, Cowden therapies, Humaworm, etc. I did so many things that I don't even remember, but I know that nothing I did for parasites changed my symptoms except when I used Malarone. I can't even tell where the lines are anymore when it comes to parasites since it seems to cover a huge range of things.
Posted by CD57 (Member # 11749) on :
How about CCSVI MB? The fact that you have these brain symptoms seems to indicate this could be something for you to look at.
The other thing I would suggest is that you look into treating bartonella...for a really long time, at really high doses of meds. Very likely responsible for digestive and neurological problems. It is proving incredibly difficult to get to. I personally think that this is why Lyme patients stay sick. And there are only a few docs who are figuring this out.
Posted by CD57 (Member # 11749) on :
Two more suggestions
IVIG more tests: IGG subclasses (immune function)
Posted by map1131 (Member # 2022) on :
Tammy, I still have your PM about your cavitation experience. Looking for money tree to do something with my two quads. My grandsons seem to think that's where you get money.
One step at a time. That's all we can do. It takes time even after removing a extremely toxic area.
Pam
Posted by AZURE WISH (Member # 804) on :
I am glad you don't have leaky gut now.
As far as the food allergies, i will tell you sometimes i have to repeatedly eat things before i notice a reaction. (maybe 2 to 4 times in one day) Also if i am exposed to something all the time that i react to, i will only have so much improvement in symptoms even if i stop eating the things i know i react to. it is so complicated.
even spices can be a problem for me. another thing i am sure you are aware of is that foods are often used in supplements. (it seems if you want the supplements without preservatives and junk - it has food ingredients) I am just trying to figure this all out now. I have found rotating foods and keeping a food/symptom diary has been very helpful. I finally have a dr to help me with all this and i plan on being muscle tested for food sensitivities/ reactions.
For years, i have suspected adrenal problems. my new dr gave me a script for an Adrenal Stress Index Panel (this test is a saliva test taking at 4 specified times during 1 day). thats the complete thing. i saw adrenals on your list but wasnt sure if that was just looking at one thing or everything.
I had another question... in general did mediations or supplements make you only worse, worse than a bit better or was it aneutral thing and nothing changed?
Posted by baileypup (Member # 22824) on :
MB, It sounds like like you've uncovered every avenue in your search, worked with the best doctors and pursued all options. It must be extremely frustrating and disheartening!
Have you considered or tried electrodermal screening or muscle testing? My LLMD, who works closely with Dr. H., uses EDS in conjunction with her other modalities. As you know, testing is highly inaccurate, and this assists in peeling back the onion, and uncovering what your body needs, and what to treat first. I have used it for testing what I should treat, what supplements or antibiotics to use, what dosages etc. It's of utmost importance to find a practitioner that is highly skilled, just as it is a good llmd.
I pray that you find the missing piece to your puzzle...
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by CD57: How about CCSVI MB? The fact that you have these brain symptoms seems to indicate this could be something for you to look at.
I'll keep that in mind, but my symptoms improved a lot with a brief course of IV Vanco, so it's probably not the issue, or at least not the main issue if it is there. I'll keep it there in my head.
quote: The other thing I would suggest is that you look into treating bartonella...for a really long time, at really high doses of meds. Very likely responsible for digestive and neurological problems. It is proving incredibly difficult to get to. I personally think that this is why Lyme patients stay sick. And there are only a few docs who are figuring this out. [/qb]
This I've done extensively. I treated this for a long long time under Dr. H, but again we didn't use IV antibiotics, so that's going to open a whole avenue.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by AZURE WISH: I am glad you don't have leaky gut now.
As far as the food allergies, i will tell you sometimes i have to repeatedly eat things before i notice a reaction. (maybe 2 to 4 times in one day) Also if i am exposed to something all the time that i react to, i will only have so much improvement in symptoms even if i stop eating the things i know i react to. it is so complicated.
even spices can be a problem for me. another thing i am sure you are aware of is that foods are often used in supplements. (it seems if you want the supplements without preservatives and junk - it has food ingredients) I am just trying to figure this all out now. I have found rotating foods and keeping a food/symptom diary has been very helpful. I finally have a dr to help me with all this and i plan on being muscle tested for food sensitivities/ reactions.
For years, i have suspected adrenal problems. my new dr gave me a script for an Adrenal Stress Index Panel (this test is a saliva test taking at 4 specified times during 1 day). thats the complete thing. i saw adrenals on your list but wasnt sure if that was just looking at one thing or everything.
I had another question... in general did mediations or supplements make you only worse, worse than a bit better or was it aneutral thing and nothing changed?
I'm not sure. I'm considering making a change to my plan. I might possibly return to Dr. H, but the money thing is really the main restriction. That and Dr. H doesn't like me very much. However, L -- his NP loves me and may help me out.
She'll run all the adrenal stuff. But as far as medicines go. I get sick on vitamins, Vitamin D, Fish Oil, and now MSM. I think they trigger my immune response to "improve" but when it happens the inflammation goes up too. So the good along with the bad makes it really hard.
I have to kill this infection. Most medicines I tolerated well. Only Vanco, Tetracycline, Doxycycline, Malarone and Bactrim were helpful. Vanco I'm allergic too, Bactrim, I'm "probably" allergic to, but not entirely sure yet.
Those are the drugs that helped.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by baileypup: MB, It sounds like like you've uncovered every avenue in your search, worked with the best doctors and pursued all options. It must be extremely frustrating and disheartening!
Have you considered or tried electrodermal screening or muscle testing? My LLMD, who works closely with Dr. H., uses EDS in conjunction with her other modalities. As you know, testing is highly inaccurate, and this assists in peeling back the onion, and uncovering what your body needs, and what to treat first. I have used it for testing what I should treat, what supplements or antibiotics to use, what dosages etc. It's of utmost importance to find a practitioner that is highly skilled, just as it is a good llmd.
I pray that you find the missing piece to your puzzle...
This has been suggested to me, and I'm thinking about possibly doing it. I have a hard time justifying the concepts but Erica is pushing me -- or at least, ... suggesting I do it. I told her I'll check it out eventually.
I think what I need is hardcore IV antibiotics, and I think I'm starting to get an idea of which ones to use and who to deal with in order to get them. I need to smooth out the plan though so it's going to take a little bit longer but I think things will work out in the end.
Posted by springshowers (Member # 19863) on :
Regarding Mold .. You said you treated it with treatments to your body. But did you find the source or reason for having mold issues that may be in your surroundings / home?
I assume you must have because you could not get improvement if you treated but continued to be exposed ongoing? Right?
Posted by springshowers (Member # 19863) on :
PS I have had a Chest Port and A Picc line too. If you have any questions I would be happy to try to answer them..
Posted by Abxnomore (Member # 18936) on :
I have not read this post in it's entirety so pardon me if this has been addressed, but have you been tested by Genova labs with the sophisticated methylation tests for genetic defects and the ability to detox, particularly phase II of liver detox. Amy Yasko deals with this issues a lot, too.
I bring this up since you mentioned that many supplements and meds give you a hard time.
Posted by Tammy N. (Member # 26835) on :
MB - Lucky you, no cavities. That's a rare, awesome wonder. But have you had any wisdom teeth pulled? It is in this vacant spot that cavitations often occur, unbeknownst to the person. Unless these almost-invisible infections are eliminated, we stay sick.
Also, I agree with baileypup about some type of muscle testing. It's cool to let our bodies convey to the practitioner what is going on, what is needed and what is not. The key is finding the right practitioner. Then it becomes an invaluable tool.
Map - I am so glad cavitations are on your list of things to take care of. I think it will be pivotal for you, since it was your extraction that was the thing that triggered your illness in the first place. I hope you are able to get this handled sooner than later. It would be so wonderful if it was this treatment that was the start of getting your life back (my prayer for you).
Abxnomore - if it's not too much trouble, could you please PM me some more details on this type of testing. I don't know much about it, but am interested.
Have a beautiful day, Tammy
Posted by baileypup (Member # 22824) on :
MB, just a thought:
Before you take on the expense of seeing Dr. H., or another LLMD, or starting IV antibiotics, why not spend a minimal amount of money getting energetic testing?
I believe in trusting your instincts, and if your gut is telling you IV antibiotics are the way to go, then why not test these specific antibiotics and see how they resonate with you? It may sound ridiculous, but I have tested empty IV bags and scrips.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by springshowers: Regarding Mold .. You said you treated it with treatments to your body. But did you find the source or reason for having mold issues that may be in your surroundings / home?
I assume you must have because you could not get improvement if you treated but continued to be exposed ongoing? Right?
I believe the Mold likely came from a source prior to even moving into my current apartment.
My current apartment "appears" to be Mold free and very clean. We'll know whether the mold is still present I suppose by reperforming the mold testing via blood. I'll do that. I'll add it to my list.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by Abxnomore: I have not read this post in it's entirety so pardon me if this has been addressed, but have you been tested by Genova labs with the sophisticated methylation tests for genetic defects and the ability to detox, particularly phase II of liver detox. Amy Yasko deals with this issues a lot, too.
I bring this up since you mentioned that many supplements and meds give you a hard time.
I haven't been tested. I will mention this to the doctor again but I brought this up before and I don't think this was an issue for me based on their report. We'll cover it though.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by Tammy N.: MB - Lucky you, no cavities. That's a rare, awesome wonder. But have you had any wisdom teeth pulled? It is in this vacant spot that cavitations often occur, unbeknownst to the person. Unless these almost-invisible infections are eliminated, we stay sick.
My Wisdom teeth stayed down within my jaw and never arose. I saw a surgeon to confirm that I would/wouldn't have to pull them. He did X-rays and told me they were fine and there was no need to touch them as long as they stayed down. So far they haven't moved.
quote: Also, I agree with baileypup about some type of muscle testing. It's cool to let our bodies convey to the practitioner what is going on, what is needed and what is not. The key is finding the right practitioner. Then it becomes an invaluable tool.
Map - I am so glad cavitations are on your list of things to take care of. I think it will be pivotal for you, since it was your extraction that was the thing that triggered your illness in the first place. I hope you are able to get this handled sooner than later. It would be so wonderful if it was this treatment that was the start of getting your life back (my prayer for you).
Abxnomore - if it's not too much trouble, could you please PM me some more details on this type of testing. I don't know much about it, but am interested.
Have a beautiful day, Tammy
Thanks Tammy, I'll keep the Muscle Testing in mind.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by baileypup: MB, just a thought:
Before you take on the expense of seeing Dr. H., or another LLMD, or starting IV antibiotics, why not spend a minimal amount of money getting energetic testing?
I believe in trusting your instincts, and if your gut is telling you IV antibiotics are the way to go, then why not test these specific antibiotics and see how they resonate with you? It may sound ridiculous, but I have tested empty IV bags and scrips.
That's a possibility, but I'm not sure how comfortable I am with the concept yet. I'm investigating it though. My girlfriend is helping me. It's a pretty far out concept to me but I'm learning as I go.
Posted by springshowers (Member # 19863) on :
Wow are you able to just write a list of tests and your doctor will order what you have chosen and do it all.
Is this because maybe you can cover all the costs yourself? I have been able to suggest and ask for certain tests but certainly not to the extent you are making here.
I would love to hear your process and how it all will be included and ordered up by a doctor. I know you can be more and more tests done yourself via labs and even online etc.. So maybe your doing things that route too?
Posted by map1131 (Member # 2022) on :
Something tells me MB isn't going to give up.
His planning and analyzing is a kick axx attitude.
He'll find it...might go the wrong direction but I don't think it will be for long and he'll get on the right course.
Somehow someway!
Pam
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by springshowers: Wow are you able to just write a list of tests and your doctor will order what you have chosen and do it all.
Is this because maybe you can cover all the costs yourself? I have been able to suggest and ask for certain tests but certainly not to the extent you are making here.
I would love to hear your process and how it all will be included and ordered up by a doctor. I know you can be more and more tests done yourself via labs and even online etc.. So maybe your doing things that route too?
Medicare and Masshealth pay for a lot of testing if the doctor orders it. I can pay out of pocket for "some" testing. All the testing I'm listing isn't going to be performed. Only some will make it to the finish line based on what my physicians feel is appropriate, as well as which will or won't be covered by my insurance.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by springshowers: MB I wrote a big long Message about my whole experience morning noon and night doing a huge integrative protocol of IVS and medications and diet and detox and supplements and and and and and.... the list his huge and it was scheduled along with my doctors at a clinic for six hours a day there and then the rest at my home. Including doing IV abx at home that had to be done am and pm and literally ever hour was something and result was a push so hard that my body had no choice but to change.
I mention the house and mold because even during that i believe there was a weight holding me that I never identified. I made a lot of progress but it would wax and wane backwards at times and i could just feel it in my blood. Something was affecting me in my surroundings negatively. Going to the clinic daly for treatment was my first clue. Because even though I was herxing and curled up in chair at the clinic in a dark room along crying.. I felt this sense that that weight and feeling usually had was not there most of the time when i was at the clinic.
I have been financially forced out of my home now and I do not know if it is mold for not.
Why have I not heard of blood test for mold and why did not get this offered to me by a doctor. Would you send me info on what those tests are you took MB. I am interested.
Anyway.. I spent time here in 2009 and 2010 sharing what my days were like but it was pushing myself through 12 hour days that had every hour about scheduled to be doing some treatment or modality or detox ..... and to go full on break the mold and patterns your body is stuck in and on.
Killing the infections is part of it but I would say it ended up being only half of it. The rest was supporting the body and detoxing and making the body move and change and flow and get unstuck. Once you get i "moving" it will run on its own so much better like you went through and rebuilt an engine. But the work has to be done for the ride to happen.
It was a huge commitment. i saw others at the same clinic doing the IVs and skipping all the other things and recommendations and that was not me.
I had a schedule all day every day to be doing something for my body and the IV abx were about 3 hours a day and the other supportive and treatment IVs were another 3 and and then there
Kick iAxx and force your body to change.
It changed my life and my path and my body now is and reacts differently after being so stuck for all those years in that same rut and I would say "nothing works" all the time.
I heard about people doing this and doing that and it worked and nothing worked for me. It was such a defeating feeling.
My body was so stuck and not able to respond to anything in anything like a normal person. While sick sick for 10 years I was sick for alot of childhood and teen years with various infectious type illnesses and I had many years to get so stuck building up to when I had onset of severe illness and then it snapped to bedridden and severely stuck.
So what I am saying is there is a way to Unstick yourself and I know you can change your body and will never be the same.
It took a clinic setting for six of the hours a day and the other six I worked around that and did things at home including my am and pm IV abx and diet and detox and exercise and enemas and baths and meditation and and and and and......and at the clinic I was plugged into an IV the whole time and not just ABX but a slew of alternative IVs scheduled though the day of IV Ozone UVB and IV peroxide dmso and IV Glutithioe and IV Vitmain C and IV nutrition and there were things there like Cold Laser and Ozone Saunas and foot baths and and energy testing and and and.. well the list goes on.. None stop every day..
Funny how much we can do when we push it or there are supports around us and we have a schedule and appointments and goals and others helping us etc... We do it even when we think we can not do one more thing. We do it.
Kick Axx
That is what I recommend...Be strict with yourself and push through and hard and pack up your time and days with more than you ever thought you could or would.
Force a change. Promise Yourself. Follow through and Always keep in line that line you have to cross to make the change is always further out there than we think so therefore do things to the extent like a workout where a trainer may push you to your max and you can barely breath and get through it but then later you feel the changes it brought you.
I have never been the same since my six month marathon.
Thanks for the advice. The testing for mold was done for Stachybotrys chartarum IgE, IgG and IgA. It was sent to Quest I believe and then Quest forwarded it out to an independent lab called IBT Reference Laboratory.
Staying organized and aggressive isn't a problem for me.
Posted by Healing in Santa Cruz (Member # 7798) on :
Sorry,not up to reading all this but wanted to know if u have been tested for KPU/HPU Pyrroluria.I went yrs with no shifts until I did the protocol.
Also I just came up with the Powassan virus. They say there is nothing for it,but I am using Byron White AV antiviral and its helping.
Also there is the Fry bug peeps r coming up with.
People probably suggested these things but if not,hope it will help. Take care Posted by METALLlC BLUE (Member # 6628) on :
Thanks for the information Healing. What is KPU/HPU anyway?
Posted by lou (Member # 81) on :
Kinda wondering if it is worth doing anymore lyme testing on a longrunning chronic case. A lot of us are seronegative because our immune systems are not producing antibodies anymore. Or if they are, they are complexed with antigen and do not show up on tests.
Unless there are non-antibody tests that you could do instead.
Posted by METALLlC BLUE (Member # 6628) on :
I showed up blaring positive on the IGM and IGG for Igenex, but it was also NYS and CDC positive. And that was after 6 years of antibiotic therapy.
Posted by Abxnomore (Member # 18936) on :
Interesting that you still tested positive, since it is usually said that the sickest people are the ones who don't mount an antibody response. In theory, you should be doing better then. So much for that theory.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by lou: Interesting that you still tested positive, since it is usually said that the sickest people are the ones who don't mount an antibody response. In theory, you should be doing better then. So much for that theory.
I suspect 6 years of antibiotic therapy and 4 weeks of IV Vancomycin in between probably had something to do with "improving" my health.
I would say I wasn't the sickest person when the testing was done. My CD57 was 85. At 35% function I am definitely not the sickest. I can move around my house, but going outside is a miserable experience. I'm not totally bedridden most days and I can exercise daily if I like, but I'm fatigued and tired and have to carefully control what I do -- even mental stress, as well as what time I go to bed, etc.
So 35% is much better than where I started, which was 15-20%. I was being hospitalized a lot before diagnosis because no one knew what was wrong.
The big issue in my case is:
A: Undiagnosed for near 25 years (Dr. H thinks I was about 2 years old when bitten based on parental accounts and medical reporting)
B: I had multiple co-infections, including Rocky Moutain Spotted Fever, Mold, Mycoplasma, CPN, Babesia, Bartonella (BLO), EBV, Lyme Disease, as well as true to life post trauma from childhood abuse. All of those showed up on testing. There is no telling what else I have that we missed.
C: I was given 1 year of steroids and methotrexate.
D: When I was treated for Lyme, the co-infections went untreated until 2009
Those factors are a sure fire way to screw a Lyme patient over. And I definitely got screwed.
Posted by METALLlC BLUE (Member # 6628) on :
I have bad news. A temporary setback I suppose. I received this e-mail from Dr H's office today:
Hi Michael,
L has reviewed your email with Dr. H and says that, after careful consideration, she and Dr. H. do not feel that they have any additional therapies to offer you at this time. If you have any further questions, feel free to contact the office again.
Here was my original e-mail to them:
Hi L, Over the last year I've pursued a number of therapies that we talked about the last day I saw you and unfortunately the results were not satisfactory. I've talked with family and we've decided it's time to go with the IV antibiotic route that you and I discussed. I'm doing a great deal of research and given the complexity of my case, I'd like to talk with you first in order that I have an idea of whether you can offer help. If that requires a phone consult, I'm willing to pay. I simply want to ensure we're on the same page about taking a very aggressive approach to therapy before I spend a lot more money and do a lot of driving etc.
Please let me know.
Sincerely, Michael P
Posted by METALLlC BLUE (Member # 6628) on :
Being dropped really isn't cool. Posted by seekhelp (Member # 15067) on :
No, that isn't cool at all. Didn't you say Dr. H claims believes some patients 'want' to be sick or something along those lines? I'm NOT saying you are one, but I thought he had an odd general philosophy.
Posted by METALLlC BLUE (Member # 6628) on :
Want? No it wasn't quite like that. It was more along the lines of "emotional blocks" as he called them. I told him that if emotional blocks were my problem then why did I respond so well to Vancomycin and Tetracycline and Doxycycline? I did "extremely" well on IV Vanco, but I developed an allergy and a subsequent PICC line infection.
You don't get well on an antibiotic and then relapse because you have "emotional blocks." Not in my case.
I never gave them a hard time nor was I non-compliant with any therapy. I was always organized and took part in the process though by asking questions, and putting forth ideas as well as listening carefully to them. I did exactly what I was told.
I got better with certain therapies but quickly would relapse and the drug would stop working. The only drug that seemed to help was Malarone, Doxycycline, and Bactrim but I developed a strange reaction to the Bactrim, my skin turned a very "sun-burned" type of response even though I hadn't gone out in the sun. We had to stop because of that.
The last appointment we had he told me that my last option with his office was to do IV antibiotics. I told him I wasn't ready to do it and I asked him if it was ok to wait until I felt comfortable. He said something about "Post Trauma" from my 2005 Sepsis incident and I told him "Yes, I agree, that's why I'd prefer to wait until I feel more comfortable." He and L said it was fine. I told them I'd come back at a later time if necessary and they said it was fine.
I know they're not being honest about not being able to give me additional therapies. Other people are receiving aggressive IV antibiotic therapies.
So, basically I got owned. Believe it or not, I'm really not sure who to turn to now. I have a huge list and I can't think of anyone who will be willing to just do what needs to be done without having to jump a lot of hoops.
[ 07-12-2011, 02:07 AM: Message edited by: METALLlC BLUE ]
Posted by seekhelp (Member # 15067) on :
Emotional blocks seems like a far-fetched theory w/o being a licensed psychiatrist. I'm not saying mental issues aren't real in any way. Just because someone doesn't make big improvements with the doctor's therapy doesn't automatically mean it's our fault IMO.
While that office looked for a lot, I will say there was stuff they didn't look for. When it was too outside the box, they closed up. I think there are a finite number of compartments in many doc's eyes causing illness and they are the only ones that will be opened. I challenged them on a theory that is kind of far-fetched and they closed up fast.
I'm sorry you're stuck in this position now.
I may be a little blunt, but I think the downfall of getting the treatment you need may be your super attention to detail / notes. I respect it, but many people would quickly determine one is not 'that sick' if able to write books of data and capture endless details. It's tough to understand illness becomes your life when feeling terrible.
Did the person who got all those serious IV treatments not offer that type of detailed feedback to the physician? People on death's door usually can't function like that.
Again, I am NOT knocking you. I'm like you in some respects with my detail, but to a lesser degree. Just be aware what you consider 'helping' your doctors may be perceived as a threat or differently than wanted. Even my own wife often makes comments like this about me so what's that tell you? What on Earth do you think our doctors believe?
Anyone who can't understand someone being gun shy about IV after a life/death sepsis event, well......I imagine that is something you need to experience to fully understand. It sounds incredibly scary. I'm sorry you went through it.
Posted by momindeep (Member # 7618) on :
Metallic...I am bummed for you. I was following all these things you have been writting and curious to what the journey would be like for you on this path you have thought out.
When does a LLMD drop a patient? Is Dr. H a LLMD? Maybe I just haven't heard of this before...I know regular doctors that kick patient's butts to the door, but not LLMDs.
So sorry...wish we all could find you a doctor willing to consider your ideas, put the data together and do the therapy...write reports on the entire process so everyone could learn from it...a perfect world...I think you have a lot to offer the Lyme community.
Don't give up...there is a good possibility that there is a very valid reason why this did not come to pass.
Posted by baileypup (Member # 22824) on :
MB,
I would feel like it's a slap in the face. I agree with seek, after a life threatening sepsis event, who wouldn't be scared!
I have so much respect for Dr. H., this disappoints me. Could you follow up with some questions as to why they will not take you as a patient, when you have not utilized all that is available?
If they do not take you as a client, can you ask the reason, and why they feel your treatment failed...was it something you did, or something you need to change? They owe you that....
Sometimes , when things like this happen and the door closes, it's because another path is meant for you.
Posted by lou (Member # 81) on :
When a patient has had a lot of treatment already, some doctors get gun shy and push him/her out the door. Difficult cases are trying, and in our current situation, trying gets doctors in trouble.
Not sure it is always the case that something else is meant for you, that you needed to move on. But sometimes it does happen. I went to a well known doc for a short time, but had to find someone else and it turned out that the well known doc did not know how to handle cases like mine, and the doc I went to next had a better idea of what to do. It wasn't the rescue I wanted because no one has it figured out, more a matter of at least not doing the wrong thing.
So, hope this makes a little sense and that you will find someone who can take you to the next step in your treatment.
BTW, I was pushed out the door of a doc who didn't want someone who had already been treated a lot and wasn't well. After more than ten years post diagnosis, I have had a lot of doctor experiences.
Posted by glm1111 (Member # 16556) on :
Hi MB,
So sorry you are having such a hard time. I agree with canefan and several others that have posted about treating for parasites.
I was at deaths door after 4 years on abx including 6 mos of IV Rocephin and 2 years of IVIG. It took me 6 mos of 16 caps a day of strong herbs from The Monastery of Herbs and salt/c till these bas...ds let go.
I couldn't have been more shocked when they appeared in the toilet. The protocols you mentioned above for treating parasites, was not nearly enough IMO.
You may have the Filarial Worm co-infection and need to treat more aggressively. Humaworm is not strong enough. Have you tried salt/c at all? It is VERY powerful and the parasites can't stand it.
Hoping you would give this a try along with maybe some Parastroy to see if you get any reactions/results. Also Monastery of Herbs are excellent as well and saved my life.
They have specific herbs for Lyme, bart, babs, parasites etc. Persistence with antiparasitics is KEY. Thoughts?
Gael
Posted by seekhelp (Member # 15067) on :
I think what Gael said makes a lot of sense given the history.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by seekhelp: Emotional blocks seems like a far-fetched theory w/o being a licensed psychiatrist. I'm not saying mental issues aren't real in any way. Just because someone doesn't make big improvements with the doctor's therapy doesn't automatically mean it's our fault IMO.
I saw a psychiatrist and a social worker (Been seeing the Social Worker for 15 years now. Neither of them told me I had "emotional blocks." The Psychiatrist did tell me that she felt it was time for me to "stop searching" for a solution and to simply get on with my life. I told her that 35% function, an inability to leave the house, inability to work, and feeling sick alot was not fair to me and not a life worth living, so until I exhausted all known options, I wasn't going to "accept" this lifestyle. I told her it was illogical, and she didn't agree. I told her, well you're also not debilitated and sick and fighting to be understood, treated, and helped. I didn't go back to her, but -- she did agree that given my situation I am a mentally healthy person.
quote: While that office looked for a lot, I will say there was stuff they didn't look for. When it was too outside the box, they closed up. I think there are a finite number of compartments in many doc's eyes causing illness and they are the only ones that will be opened. I challenged them on a theory that is kind of far-fetched and they closed up fast.
I agree.
quote: I'm sorry you're stuck in this position now.
Me too, but I'm not as anxious and shocked as I was the other day. I'm thinking this thru.
quote: I may be a little blunt, but I think the downfall of getting the treatment you need may be your super attention to detail / notes. I respect it, but many people would quickly determine one is not 'that sick' if able to write books of data and capture endless details. It's tough to understand illness becomes your life when feeling terrible.
The irony is that if being myself is keeping me sick, then it's no wonder I stayed sicker for as long as I did. I suppose my inability to accept diagnosis that I knew weren't correct, and my resistance probably made things worse. However, I know I was right to do it given the information I had. Given what I know now, I also believe I did the right thing. I wasn't going to just accept "emotional blocks" as the downfall of my health and what was keeping me ill. Nor was I going to just jump back onto the IV antibiotics until I felt I was mentally ready and capable of committing to it. I asked for time off, I wasn't a jerk about it. However, no matter how clear I am, perhaps I am threatening to some people because I avoid sugar coating. I show respect, but if I disagree, I explain why, and ask them if they still feel very strongly about my pursuing it. Sometimes they would say no and agree, other times they would say "No, I really think this is what you should try, even though you make good points."
If someone can't handle my participation, then I shouldn't be working with them. It's not me that is the problem, although I obviously can cause someone else to be reactive if they're already a very unstable or egotistic, or easily threatened person.
quote: Did the person who got all those serious IV treatments not offer that type of detailed feedback to the physician? People on death's door usually can't function like that.
Yes, she's just like me. I'm not on death's door. I'm 35% functional. I'm trapped between the world of going outside but not being stuck in bed "ALL" day long. I am stuck in bed often for many hours when I'm so tired I can't get up, but it clears after a few hours and I can shower, wash dishes etc, but it's tiring.
quote: Again, I am NOT knocking you. I'm like you in some respects with my detail, but to a lesser degree. Just be aware what you consider 'helping' your doctors may be perceived as a threat or differently than wanted. Even my own wife often makes comments like this about me so what's that tell you? What on Earth do you think our doctors believe?
I think that I'm not perfect, and I think I've made it clear that I can't do it alone and therefore pay them a lot of money to help me, but at the same time, I've seen a lot of doctors who made a lot of crucial errors and so I became a well educated consumer of medical care. The more I learned, the more help I got. The more organized I got, the more it detailed the complex nature of treatments and of appointments.
L, the woman I saw at Dr. H's office never would have booted me. She told me straight to my face, and I have it recorded on tape, as well as witnesses that she "Absolutely loves the way I particiate and organize things, and that she wishes all patients could or would be able to provide such thorough material so they could quickly move on to dealing with the problems."
I know if I got dropped for personal reasons, it's from Dr. H directly because he really didn't like me. No one who went with me to appointments understands why either. Because while there I was always nice but the did notice his behavior was irrational and strange towards me.
quote: Anyone who can't understand someone being gun shy about IV after a life/death sepsis event, well......I imagine that is something you need to experience to fully understand. It sounds incredibly scary. I'm sorry you went through it. [/qb]
I was definitely not going to jump into it and that's why I asked for patience, and asked if I could take a break from seeing them until I was ready to move forward. I felt it was a good idea for them and me, and they agreed at the time, and now suddenly this?
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by momindeep: Metallic...I am bummed for you. I was following all these things you have been writting and curious to what the journey would be like for you on this path you have thought out.
I know, me too. Thanks for empathizing.
quote: When does a LLMD drop a patient? Is Dr. H a LLMD? Maybe I just haven't heard of this before...I know regular doctors that kick patient's butts to the door, but not LLMDs.
He's done it to a lot of other patients that I've come in contact with. He is an LLMD. I don't know how he can justify doing this when there are plenty of options left. He told them to me the last time I saw him and said "Come back when you're ready to move forward with the IV."
quote: So sorry...wish we all could find you a doctor willing to consider your ideas, put the data together and do the therapy...write reports on the entire process so everyone could learn from it...a perfect world...I think you have a lot to offer the Lyme community.
I've given what I could. I became exhausted though and have started primarily just maintaining projects and focusing on myself. I wish a lot that the doctors would explain to me what they think and want instead of behaving poorly. This isn't the first time I'd been dropped, but other times I can understand. They couldn't help me because I told them that they were incorrect in the diagnosis and that I felt we needed to pursue something else. When they said "No, we're not going to pursue anything else" I said "Well, then we have nothing left to do here." It wasn't irrational, in the end I was right. I had undiagnosed Rocky Mountain, Lyme, and a long list of complicated problems that I didn't ask for. I never asked for this. I never wanted to be forced to have to do the job of my physicians. I never wanted to have to diagnose myself, and I never wanted to be put onto such complicated medication routines that I had to be hyper organized. I'm alone, no one else is going to do it for me.
quote: Don't give up...there is a good possibility that there is a very valid reason why this did not come to pass. [/qb]
You mean "a reason for everything?" Probably, but I don't know that their reason is ethical, rational or right. I will find out though and I'm going to call their office. It's probably not a good idea -- I feel intuitively that it's pointless -- but others I trust told me to give it another shot.
Absurd.. I don't know. I'll just ponder things for a little and it will be worked out.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by baileypup: MB,
I would feel like it's a slap in the face. I agree with seek, after a life threatening sepsis event, who wouldn't be scared!
Absolutely. I reacted initially assuming I'd just been dumped, but I'm going to find out if there were "practical" reasons before I leave my posts up. If I was wrong I'll remove the parts I wrote about being angry.
quote: I have so much respect for Dr. H., this disappoints me. Could you follow up with some questions as to why they will not take you as a patient, when you have not utilized all that is available?
That's how I feel. I want to know why.
quote: If they do not take you as a client, can you ask the reason, and why they feel your treatment failed...was it something you did, or something you need to change? They owe you that....
I will try to find out.
quote: Sometimes , when things like this happen and the door closes, it's because another path is meant for you. [/qb]
I sure hope so, I believe things will be worked out.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by lou: When a patient has had a lot of treatment already, some doctors get gun shy and push him/her out the door. Difficult cases are trying, and in our current situation, trying gets doctors in trouble.
I agree, unfortunately something smells "off" in this case since they told me -- without hesitation -- they would prescribe what was needed. Truth be told they don't even have to do the prescribing. They just have to recommend what direction I take. I can get the prescriptions somewhere else.
quote: Not sure it is always the case that something else is meant for you, that you needed to move on. But sometimes it does happen. I went to a well known doc for a short time, but had to find someone else and it turned out that the well known doc did not know how to handle cases like mine, and the doc I went to next had a better idea of what to do. It wasn't the rescue I wanted because no one has it figured out, more a matter of at least not doing the wrong thing.
I hope you're doing better now.
quote: So, hope this makes a little sense and that you will find someone who can take you to the next step in your treatment.
BTW, I was pushed out the door of a doc who didn't want someone who had already been treated a lot and wasn't well. After more than ten years post diagnosis, I have had a lot of doctor experiences. [/qb]
Yeah, same here. Frustrating. The reality is, they needed to do IV from the start. A year of immunosuppressants and steroids? 25 years undiagnosed. Tremendous neurological symptoms? It wasn't my fault. It was their lack of knowledge or unwillingness that led to this. It's sad but I won't let myself be abused or left to die. I fought and I'll keep going to the end. I deserve the right care.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by glm1111: Hi MB,
So sorry you are having such a hard time. I agree with canefan and several others that have posted about treating for parasites.
I'll get to it at a greater length at some point. I improved so rapidly on IV Vanco, that's why I'm pushing for this right now.
quote: I was at deaths door after 4 years on abx including 6 mos of IV Rocephin and 2 years of IVIG. It took me 6 mos of 16 caps a day of strong herbs from The Monastery of Herbs and salt/c till these bas...ds let go.
I couldn't have been more shocked when they appeared in the toilet. The protocols you mentioned above for treating parasites, was not nearly enough IMO.
I'm glad things are looking up for you. I've not done years of anti-parasitics but I've done a lot along the way. I could do more though, and I appreciate you leaving options available for me here. I will get to it.
quote: You may have the Filarial Worm co-infection and need to treat more aggressively. Humaworm is not strong enough. Have you tried salt/c at all? It is VERY powerful and the parasites can't stand it.
I've been asked this a lot. I still have not, but I'm going to wait because I don't have the mental ability to withstand another 6-12-or 24 months doing therapies that I absolutely can't be sure will work. I need IV right now. I can't stand it anymore. I'll do the Salt C along the way but mentally I've gotta straighten this out before I can organize that plan.
quote: Hoping you would give this a try along with maybe some Parastroy to see if you get any reactions/results. Also Monastery of Herbs are excellent as well and saved my life.
They have specific herbs for Lyme, bart, babs, parasites etc. Persistence with antiparasitics is KEY. Thoughts?
Gael [/qb]
Thanks for the additional information Gael, it's always helpful.
Posted by unsure445 (Member # 15962) on :
It probably was not personal. A few of my friends are physicians and they all say that they truly don't remember patients by name. Its just a file. Especially if you didn't see the doctor at each visit.
It probably has more to do with the fact that you haven't been a patient there in a while and you would almost be like a new patient with a long history to review.
If you want to put the theory of emotional blocks to bed you should try seeing an energy practitioner. Emotional blocks are subconscious, this is at a much deeper level that a psychologist would get at. It's beneficial on all levels, physical to emotional.
Posted by METALLlC BLUE (Member # 6628) on :
I left a message since no one picked up at the office. I said "Hi my name is Blah Blah, my phone number is :BLAH BLAH, and my treating provider was L, I'd like her to give me a call and or setup an appointment. Thank very much."
We'll see how that goes. If that doesn't garner a response I'll call and speak to one of the people I have good rapport with in the office.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by unsure445:
If you want to put the theory of emotional blocks to bed you should try seeing an energy practitioner. Emotional blocks are subconscious, this is at a much deeper level that a psychologist would get at. It's beneficial on all levels, physical to emotional. [/QB]
I appreciate the insight. I've been advised to see an "Energy practitioner" but I have a hard time justifying spending more money when everyone here who knows me knows I need more IV Vanco or a similar drug, since I responded so well to it. I don't think a person with emotional blocks would get well on a medication like that.
Posted by baileypup (Member # 22824) on :
quote:They couldn't help me because I told them that they were incorrect in the diagnosis and that I felt we needed to pursue something else. When they said "No, we're not going to pursue anything else" I said "Well, then we have nothing left to do here." It wasn't irrational, in the end I was right. I had undiagnosed Rocky Mountain, Lyme, and a long list of complicated problems that I didn't ask for. I never asked for this. I never wanted to be forced to have to do the job of my physicians. I never wanted to have to diagnose myself, and I never wanted to be put onto such complicated medication routines that I had to be hyper organized. I'm alone, no one else is going to do it for me.
MB, I hear you on that....unfortunately it's the sad state of our medical system.
My husband, who is never sick, was recently in the hospital for an "unknown" viral pneumonia. They gave him a drug, Valcyte, that was a miracle drug that he responded to in 24 hrs. Twice, they switched him off that drug, and twice he declined, taking days to recover, insisting that they could not culture the correlating virus to justify this treatment. Who cares, it worked, but the Infectious Disease Doctor would not listen, when we knew he improved on this drug, and cost him precious recovery time.
You have to be your own advocate, we have no choice! We walk a fine balance of advocating for ourselves and challenging those who have years of schooling and credentials. I am kicking myself for not speaking up more when I knew exactly what was working, but didn't want to step on anyone's egos or let on as to why I knew so much about all this stuff.
I think you have no choice but to determine "your" course of treatment, and then find a doctor who will support you. I wish you well...
Posted by METALLlC BLUE (Member # 6628) on :
Thanks bailey. I know I can be aggressive "sometimes" when it comes to advocating, even in front of LLMD's -- but never in my life could I imagine that this particular one would suddenly cop out and leave me hanging.
I don't understand. I tried calling again to speak to someone and they won't even take my call. It's like I've been blackballed.
Actually, someone just gave me some inside information that is starting to make some sense. Apparently someone on this board is copying posts of members who write "criticism" -- constructive or not, about this doctor and then sending these posts to this doctors office, indicating the name of the poster.
On a number of occasions many of you have heard me talk openly about my experience with this office. I've always been honest about what I observed and I've always been clear about how I felt or what I thought about my experience. I've discussed the pro's and con's that I felt best represented this LLMD's office.
In doing so, I've likely ****ed off some people. If that is the case and someone did report me, I won't apologize. I meant everything I said. The good, and the less than good. I've continued to recommend the office in-spite of shortcomings because I believe the intention is good, and that a lot of people get well and receive good care. Now? I don't know what to think. If I was reported and they didn't like what I had to say, then that's a psychological issue that he needs to work out, not me. However, maybe this has nothing to do with any of this. I don't know.
All I can do is stand behind what I've said previously and I hope that whatever has happened or is going on with that office gets better. People pay a lot of money and we deserve the very best care. We don't deserve to be belittled or made to feel like "we're" the problem.
If someone copied my prior reports, I'm actually grateful. Thank you for telling him what I think and feel. I would have easily said it to him directly without so much as blinking. It's the truth as I experienced it. Instead, I spent those appointments trying to focus on progress, not personalities, so treatment ideas and discussions were always the focus, not my opinion of the person. It wasn't until the unreasonable personality started to result in unreasonable treatment ideas that I spoke up.
So, with that said, I'm moving on and going to follow-up with some other doctors that were recommended to me via PM. I'll be honest about them publicly too no matter what type of trouble it gets me into. People deserve to know the truth.
Posted by METALLlC BLUE (Member # 6628) on :
I found another physician who treats nearly the same as Dr. H and has decided to help me (And he uses IV antibiotics when necessary). I just wanted to let everyone know.
Posted by baileypup (Member # 22824) on :
That's great MB! I hope that this doctor is a great partner that will work together with you until you're 100% fixed!
Posted by Diana 85 (Member # 23929) on :
Hi MB, I truly respect the thorough scientific approach you take to treatment. I hope you have great success with IVs this round.
You mght consider Medsonix. As an adjunct therapy to your current plan, it could be a great help based on our experience.
Best of luck to you as you embark on this next step!
Posted by METALLlC BLUE (Member # 6628) on :
Medsonix is an acoustic therapy, is that correct? Tell me a little about it Diana.
Posted by Diana 85 (Member # 23929) on :
Hi MB! I apologize for this very tardy response. I must not have come back to this thread. Just did a search for Medsonix tonight and found your question.
The best information on it is in the thread - "What Medsonix Has Done For My Daughter." We tried it based on the experience of Orion's daughter.
Medsonix therapy reduces inflammation and pain, and increases blood circulation. From our experience, I think it helps the immune system begin to work again.
We have gone 3 times, in April, May and July, about a month apart. My daughter has made amazing propress in that time, as compared to the prior 9 months. She is still on antibiotics, supplements, and an extensive exercise routine.
So many things that fall apart with Lyme are coming back. She is driving, able to sit up first thing in the morning, has increasing energy, and is living pretty much on her own again. It seems that she may really get better, as in having a life.
The difficult part may be getting there; Medsonix is only in 2 locations at this time, Las Vegas and Naples, Florida.
The first trip was pretty hard on my daughter, as she was not up to traveling. However, she has been getting much better, and on the last trip, the plane travel didn't cause a crash like it had previously.
The other consideration is the cost of traveling, and whether you are well enough to travel on your own, or need assistance.
Several people have done this as a stand alone therapy, and I am hopeful that my daughter will be off antibiotics very soon, and can continue with this, along with some herbs, supplements, etc.
You may have begun IV therapy, and I hope it is having good results for you.
If you can find a way to add this to your program, give it a few tries - 2 or 3 visits. Thanks for the documentaion of your Rife treatments.
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