Dr. H. from Colorado very abruptly just dropped a 13-year old as his patient. I was shocked and thought this group would live up to its name. Beware of this group- they could drop you, too. Dr. H. was not forthright with us.
We're in desperate need of suggestions. This is for a little girl on a ventilator!!!!!!
How about dr. J in CT?
Posted by snowboarder (Member # 6346) on :
Mike
I tried to send you a private message...your box is full. I'm pretty sure I know who your talking about. Does he practice with Dr. M? Are they in Colorado Springs?
What was his reson for doing this? I'm a patient of Dr. M and have been for quite some time. If you want to send me a private message please feel free.
Posted by snowboarder (Member # 6346) on :
Posted by snowboarder (Member # 6346) on :
I previously saw Dr. C. in MO...loved him. The cost of travel was to expensive for us. He's a little closer for you than CO.
My daughter whose 10 was also a patient of his...she's well today and has been for 1 1/2 years.
Posted by sixgoofykids (Member # 11141) on :
A friend of mine takes her daughter that age to Dr. J in CT. They are VERY pleased with him and continue to take her to Dr. J even though my friend sees Dr. H in NY! They travel from Ohio to see both docs. (The daughter was diagnosed first).
Posted by lou (Member # 81) on :
Recalling her history, I would guess that it was because she is such a high risk patient. So many lyme patients are already in bad shape when they finally get to a good lyme doc that it means we are the kind who need heroic medicine. Just the kind of medicine that attracts the lyme nazis, the ones who failed us so that we got into bad shape.
Sorry it happened. Hope you find someone to take over the case.
Posted by mikej2323 (Member # 8913) on :
His reason was she's been on the protocol for 3 months, so we should have seen something by now. She was only on Flagyl for 2 days and had to stop due to heavy reactions. He also said that there were just too many "notes" to keep track of. He's got to live with himself. We just spoke with him on Wednesday and never gave us a clue he would do that. He was very abrupt with us and wouldn't let us do a 3-way talk.
We did consult Dr. J. in CT and to be honest, he wasn't much help. I realize he was busy with his defense at the time, but all he told us to do Rocephin...no combinations...just Rocephin.
She did see Dr. C in MO and he prescribed a medication that she was allergic to!!! Imagine that- we told him twice and it was in her chart because the nurse wrote it down.
I had read somewhere once where Dr. M stated he wanted to adopt the philosophy of "pay if forward". I'm assuming Dr. H. believed the same philosophy. If this is their idea of paying it forward, I hope someone sets them straight. How could a doctor abandon a child? How do you tell a 13-year old who is almost totally paralyzed and on a ventilator that another doctor has given up on you???!!!!
Mike
Posted by Tincup (Member # 5829) on :
After reading your second post I must say the picture has become clearer in my mind. I have seen this type of thing happen before... unfortunately.
I have personally called doctors when it did. The rather blunt statement kinda startled me.. but it did make sense.
If a patient is unhappy with what a doctor is doing right from the get-go... when they are giving it all they've got.. it won't get any better for the patient or the doctor to continue the relationship.
From the post you share you state she "ONLY" got 2 "Flagyl" and you were unhappy about it.. and she "ONLY" was told "Rocephin" to take from another doctor for which you were unhappy... and from another there was a problem with possible allergic reactions which made you unhappy.
My thought is.. and I don't know.. but if a doctor is approached in that manner and critized for what he is trying to do or suggests... the problem won't get better and the patient should find help that suits them more.
Sorry about that. But at some point you will need to accept the fact that they are human.. don't have all the answers... and they can't "out-doctor" a patient with a strong opinion if the patient insists on things not appropriate in the doctors professional opinion.. or insists on doing it another way.
You've mentioned the best we've got in the field.. and if that doesn't suit you.. there aren't many more choices... other than the duck motels.
Bless her and her family. I do hope she gets good help soon.
Posted by mikej2323 (Member # 8913) on :
Tincup- I understand they are human, but to be brutally honest, you don't know all the details. Not ONE thing throughout this whole ordeal has been "easy". Anybody who has done 10 minutes of research [not implying that you haven't] knows that those with high spirochete loads OR has the liklihood of a co-infection needs multiple antibiotics. We were NEVER told that. You'd think that would be something important. Yes, doctors are human, but why don't they ever admit a mistake or if they don't know the answer, say, "I don't know". I work with doctors in my profession, so my views are also a bit "slighted". The doctor in MO flat out made an error that should NEVER happen by prescribing a drug that she had an allergy to. Surely someone who knows anything about Lymes + co-infections knows these doctors are good and I agree they have helped many, many people- but they have screwed up with us. And a little girl suffers.
Mike
Posted by Tincup (Member # 5829) on :
Mike..
If for one minute you or anyone might think I am trying to defend bad behavior or don't care about this little girl and all the others who suffer.. well, I do care.
And you are absolutely right... I also don't know all the details... not at all. I am simply going by what you posted.
What I am trying to share is an outside look at possibly why this happened... because after all you did post about it in a panic and seemed to want answers or opinions??
You said... and this is an important clue..
"Anybody who has done 10 minutes of research [not implying that you haven't] knows that those with high spirochete loads OR has the liklihood of a co-infection needs multiple antibiotics."
Actually... you stated she MIGHT have "coinfections". Is the diagnosis unclear?
And as for your research... yes, that MAY be true that multiple antibiotics could have a better chance at hitting various forms of the spirochete.... BUT...
If I were the doctor in this situation.. I would NEVER put a child on multiple antibiotics in the condition she is in... especially if she had a heavy spirochetal load. NEVER!!! NEVER!!!
Of course that point is not relevant... because obviously I am not a doctor.. but I have seen thousands of patients over the years and have watched what happens to them when too many antibiotics are prescribed at one time. NOT good! The results can be disasterous.
Also the medical literature reports deaths from severe herxheimer reactions in people who were much healthier to start with than this child when they were treated with just ONE antibiotic. I could never risk prescribing multiple antibiotics with a child this sick if I were the doctor. Sorry to say it would have to be slow and steady... and the time for recovery would be expected to be years... not instant.
I am SURE she needs help.. and sure you are sincere trying to find some.. but you've hit some of the best docs we have... and you are the one not happy at this point.
You said.. "Yes, doctors are human, but why don't they ever admit a mistake or if they don't know the answer, say, "I don't know."
Yes.. all doctors should do that. But I have heard all three of these doctors admit that at various times.
So I hope you can take a minute to see that what you read and what is reality here may be the problem. If you expect A.. and get B, C, or D... maybe look a bit deeper into why that is the answer.
Now.. what can we actually do to help you? I am willing to try and help. Please let us know what you want. And know my heart is with you...
OK?
Posted by achey (Member # 6284) on :
Hi Mike,
I was an adult when I entered the treatment nightmare, but I was very very ill. I had very severe neuro symptoms. Siezures, intermitten paralysis, a collapsed lung, swallowing problems, memory problems, I could not have typed this to you! I didn't know my family.
My LLMD in his wisdom choose one single abx IV that I was not allgeric to and began treatment, and the rollarcoaster ride began. It's not over yet! I am getting better, but it took a long while before I could tolerate multiple abx. I also had herxes that landed me in the ER on the first abx 3 times!
I am so very sorry your daughter is ill and I will prayer that she heals. I will also pray for healing for your family. I wish yyou well!
Posted by CaliforniaLyme (Member # 7136) on :
Mike, I am so sorry.
Yes, the doc is no doubt afraid for himself. Treating ALS-like conditions has become very dangerous for Lyme docs. Many of them have stopped treating completely. He also sounds inexperienced as a Lyme doc because 3 months is not long to try tx regimes at all- so it may be good you got rid of him- and that may be a way to present it to her, that you are going to find someone better-
I *would* try to get her on Rocephin and follow Doc Js advice though!! Mike, you say paralyzed and ventilator and that is all I need to know to advocate exactly what Doc J said- Rocephin!!! I used to be in the ALS/Lyme group when it was big and what we learned as a group was exactly what the Russians learned re TBE viruses and abx- that many abx speed up progression of ALS like syndromes. ONLY a few abx won't- one of those FEW is ROCEPHIN!!!! I would get her to a doc and get her on Rocephin ASAP!!!!
I hope she is stable or progressing slowly- Best wishes and I am sorry you got a coward-
This one doctor in San Jose once stopped treating Lyme patients by breaking down in front of a patient and telling her, "I just can't treat Lyme anymore because I don't want them to take my license." and almost cried in front of her saying how sorry he was- and she, she had no doctor!! Yes, it is wrong- but we can't walk in their shos- with their children to feed and provide for- and they are being taken down one by one- on purpose- it is real-
and you 13 year old dying is more real than that- and I hope she lives- people do get better who are that bad- but usually only with IV Rocephin- Take care- Sarah in CA
Posted by Michelle M (Member # 7200) on :
Mike, I'm so sorry for your niece. I know how much you love her!
I agree with Tincup and Sarah and others...
I would move heaven and earth to get her to Dr. J.
Perhaps this will turn out to be a blessing in disguise.
I am confident Dr. J has treated other children in health as poor as your niece. For many, it has been a miracle.
If it were my child, I would do this and place my trust in him.
I'm praying for your niece.
Michelle
Posted by sixgoofykids (Member # 11141) on :
I was thinking along the lines of what everyone else mentioned, Dr. J probably thought that all she could handle at the moment is ONE abx.
I know another little girl that age who goes to Dr. J and she's on multiple abx.
I would think that after some time on just the one, he would add more, but not to start out with. You wouldn't want to send her into a big herx in her condition.
Posted by mikej2323 (Member # 8913) on :
I appreciate the responses. She is still on Rocephin, but it is a smaller dosage. Transporting someone in this case is very, very serious. I'm not saying Dr. J. is a bad doctor, and I understand he wouldn't want to start on a CAP right away, but he could have said something like, "you'll need to start a 2nd abx. soon." I'm glad we didn't start a CAP right away, but if we would have just known about it, we could have started while she was in a hospital, and not at home. Does anyone know the service that provides transportation for sick children?
Mike
Posted by lou (Member # 81) on :
This is not the only area in medicine where it is hazardous to treat really sick patients. In the past, people did die of disease and it was not held against a doctor, but now there is an accountability movement. So, doctors and hospitals who don't have as good a record because they were treating the sickest, are taking a risk because it will make them look less able.
So when lyme doctors take on patients who are already very sick, AND there are insurance problems, AND the patients don't have much local backup for the inevitable problems, AND the other specialists that are needed for testing etc. don't know anything about lyme, AND there might be coinfections for which tests are not good enough.....well, really it would try the patience of a saint. Not to mention the persecution of lyme doctors and the fact that our govt health agencies have failed us in the handling of tickborne diseases.
I don't know what to tell you, but this is the scenario all of us live with, and I have been undertreated because of it. When I am being fair, I try to understand the circumstances and not blame the doctors who were afraid. Who among us would be as brave as they are to treat us at all? Heroism is not all that common anywhere. This is why I am an activist, to work with others who are trying to change the situation so that we are diagnosed sooner and treated adequately.
Posted by fatigued15 (Member # 6437) on :
Mike,
Did you see Dr. J. You can not expect him to suggest anything if he did not see her and evaluate her. I would make an appointment with Dr. J. He has saved so many children.
Keeping you all in my prayers. Fatigued
Posted by tdtid (Member # 10276) on :
Mike,
I'm an adult with this illness and can't even imagine a child having to go through this.
The only aspect I wanted to comment on was that I too read soooooo much before I actually started treatment and was sure I wanted to hit it hard and multiple antibiotics.
My LLMD talked to me for quite some time as to why that wasn't always the best answer when you are so ill and first starting out.
His comment was that even giving me a high dose of one abx would have me in the ER where they would be telling me to stop the med and then I will have made no progress.
I was too sick to think clearly and had to put my trust in him even though at the time, I wanted it fixed YESTERDAY.
My doctor is a firm believer that he doesn't like to do several abx all at once but in time, he does do more than one abx....he just starts you on one to get reactions and then adds to it.
As many have said here, if this were my child or a child I was close to, I would be busting down the door to get the child in to see Dr. J.
It's a horrid, horrid illness and I know we all can sympathize so very much for your neice and all of the family...since this does effect EVERYONE, whether you are the sick one or the caretaker or just someone loving the sick person.
Good luck and please let us know how it goes. We really do care!
Cathy
Posted by Hides1 (Member # 6348) on :
Mike what a stressful situation. I understand what you are going through. I have Lyme and 3 coinfections myself and all three of my kids have the dreaded disease. After dealing with some docs in NJ and knowing how bad the disease can get, I took my children straight to Dr. J.
Before he even saw then them, I had to send medical records and tests were ordered ahead. Has the child had an recent tests done? For instance has she had the coinfection testing done through MDL and has she had the Babesia test through Igenex? Has she had the Western Blot through Igenex and any PCR's.
This girl's situation is very fragile therefore we must really consider when she goes on meds that they are meds that will really help her. In order for her to heal you have to have the whole picture. In that pciture should be the coinfections.
I think you should call Dr J's office back or Dr. C's and get those tests done. It is so important to know what diseases you are dealing with.
I was on 3 years of anitbiotics for the Lyme before the Babesia was caught. What a waste- nothing helped ebcause I had the Babs too and needed to treat that first. Same thing happened with my son but Dr. J set it straight.
Posted by Marnie (Member # 773) on :
Mike, this story tears my heart out!
Our doctor also "dismissed" our son when he was extremely sick.
Research glucagon.
What is her pH level and blood sugar level?
Get them UP if they are low!
You can do this on your own with litmus paper (testing saliva/urine)for pH and a diabetic blood glucose (pin prick) monitoring machine to track sugar levels.
Don't give up. When one door closes, another opens. Keep up the search for another who can help.
Posted by SunRa (Member # 3559) on :
mike, I'm so sorry to hear of your recent struggles. she will certainly be in my thoughts.
I wanted to add that I'm yet another person who was strongly advised against starting with more than one abx because of my symptoms and sensitivity. And this was from a highly renowned llmd. He didn't even add a cyst-buster until after I had been in treatment for about a year BECAUSE the bacterial load was high. otherwise the herxes would certainly have ended me in the ER and set me back even further, if not killed me.
so, although I'm not a dr, I agree with others above...slow and steady would probably be best for her considering the severity of her illness.
I wish you the best of luck and I hope she gets the care she needs and deserves asap.
Posted by david1097 (Member # 3662) on :
Mike
A few points to consider;
With Lyme, from everything that I have seen and read from both Infectious disease, IDSA and journals, single antobiotics will cause some imnprovment to be seen. The multi antibiotic regime is used with some of the co-infections but again single regimes will take a dent out of them at least for a while. Even if there is a potive WB fro Lyme I would give serious consideration to the possibility of something other than Lyme being a problem. It may be once the other thing gets taken care of, lyme may crop up, but if there has been no response at all, it is pretty clear that you a bacterial cause is not a major player in the problem. The "cell wall deficent" form of Lyme. or encyted Lyme is benign during the cyst phase. The active bacreria will be killed off leaving the protected ones to come oput a lter date. Still the active will be killed and there will be some improvement on status. There are a lot of bacteria that do this and mutli drug regimes are used to get at them but still the single drugs do help, especially the ones with good penetriation (like rocephine)
You mention that one day on Flagyl causes problems. This is intersting in that Lyme does not behave like this. it take s a few days for a drug to kick in with Lyme. GIven that fast reposnse you need to check which diseases Flagyl does affect with such speed, Or the possibiity that it is an alergic reaction. Flagyl is effective for some protozoa and amebea infections. The protozoa ones can go neurologic in some cases. Ther aer many well known protozoa infection that affect animals (and humans). In neuroligic cases these will usually show up in the CSF.
Droping the patient is always difficult for a Dr. Different Drs' handle it differently, some prefer to do it quickly and get it over with. Some prrefer to try to explain why, some just tell you they can't think of anything else and therefore it is in your best interest to find someone else. In either case trying to continue with the same Dr is not a good idea as once they have reached the limits of the limits knowledge, you will not go any further. This is oarticulary true of all attempts so far have not worked.
Are you upset that the Dr is not longer seeing the paitent (your daughter/niece) or upset that she in particulr has been selected to be no longer seen. If it is the later, despite the anger of moment, with no progress and it being such a long time with the use of the "gold stadard" for lyme treatment (rocephine) with no effect, it is better to find another Dr. Having switched Drs myself for the same reason (dropped all patients) it was very interesting to see the new Dr had a new aproach, new ideas and found new things. Hopefully it will be the same with your her. For an example here have been several people on lymenet who did go to other Drs' once their original Drs could not go any further. Once they started looking again they found the actual problem was not Lyme or even an infection. Some where alergies of one sort or another, others where genetic diseases...conformed by genetice testing. This is not to critcize the LLLMD's, they did their best and what did not work is as useful as knowing what does work. The Drs' that came later had the bennefit of this information which allowed them to look at new things with a higher priority.
When you switch, you might also try to seekout different Drs, not just the ones that deal with Lyme. Enviromental medicine or a good internal medicine Dr. or perhaps a person that is an expert in tropical medicine (they see more of the odd human infections). I think given the no change in status after the use of high power antibiotics history, they will all say that it is best to look at causes other than bacteria. There are a lot of things it could be, ranging from infection to genetics and you might have to see multiple Drs to try to figure it out. Having a list of drugs that did and did not produce a reaction is critical as it can be used to rule out (and in) many things.
It is very disapointing to have to start over but with no improvement or change if I was in the same situation I would go this route, at some point if something is not working then you have to face the fact that it doesn't work and go on to the next thing.
Obviously, from your other posts, there is a long history of very severe objective symptoms. With that and all of the test results and treatment results in hand it should be fairly easy to seek out some of the specialists for the major symtoms that are being seen (I assume that these are neurological based on your previous posts). I would search the rare diseases listing on the internet to try to find a Dr at one of the universities that deals with similar symptoms. With all the information in hand I am pretty sure they can give it a quick review and tell you if it fits the basic profiles that they know and if one might want to go down that path.
Sorry to be so long winded but when I did a review of your previous posts it appears to me that with this current event it might be a time for a change in direction. It can't be any worse that the progress thus far, although it may be distressing that there is no one to turn to (a security blanket that people that have a Dr feel) for a while.
Good luck .
Posted by char (Member # 8315) on :
I am just real sorry that your neice is still so sick and now facing finding different dr. to treat.
I remember your previous posts and I will continue to pray for her and your family.
Char
Posted by seibertneurolyme (Member # 6416) on :
Mike,
A couple of things to consider.
Regarding the Flagyl -- Dr C in Missouri gave this to hubby as a single med for babesia -- hubby could only take 1/4 pill daily -- even at that low dose after 2 weeks his headaches and eye pain were much improved. Moved on to quinine and clindamycin next.
Has recently had a relapse of babs symptoms -- primarily seizure-like episodes with greatly increased tremors and myoclonus. I put him back on quinine with tetracycline and he is once again showing great improvement. Also using IV heparin again.
This time we have a scrip for Tindamax (instead of Flagyl) and have started adding it in at 1/2 of 250mg pill daily. Has only been taking this combo for 2 days so too early to see results yet.
Seriously need to consider babs in the equation even if previous tests have been negative.
Hubby mailed off a test kit to the new lab in Arizona today to look for babs on a blood slide.
Second idea -- contact the lady neuro at Columbia. She is expensive, but would be qualified to evaluate for Lyme and other possibilities.
Has your niece had a SPECT scan? -- this could be a critical test to evaluate for hypoperfusion and/or brain inflammation.
Also might want to consider testing for antibodies to myelin -- can be done by blood test and then confirmed with spinal tap if necessary. AAL is one lab that can do this blood testing.
If you are looking for non-tickborne neuro possibilities then you might want to check with Dr P in Naples, FL -- author of Brain Recovery.com and a couple of other books.
Dr P was a brain surgeon who decided he wanted to help people with neuro problems avoid surgery -- is into preventative nutrition. Is doing an FDA trial with IV Glutathione for Parkinson's patients. Is familiar with all the alternative labs and could test for fatty acid deficiences. Uses the P.K. protocol also -- IV phosphatidylcholine with IV glutathione.
He also has his own hyperbaric oxygen chambers. However, please be aware that Dr P is NOT lyme literate -- at least he wasn't when hubby saw him 5 years ago.
Maybe one of the alternative med docs would be a good choice to help with non-Lyme issues.
Be sure and keep us informed as to outcome of doctor search and progress of your niece.
Bea Seibert
Posted by mikej2323 (Member # 8913) on :
This is why I like this board so much- ideas come out of nowhere. I've had a couple of doctors tell me to stay away from the support boards...yeah right, a good deal of great informaton is shared here!!!!!
After spending practically every free moment I have researching, I have some thoughts:
One thing I didn't post on the board is that she did test positive for Mycoplasma pneumoniae three different times by both serology & CSF. All three times was in the "high positive" category. So, if this is an isolated Mpn. case, then Rocephin would not be beneficial. If the QRIBb test is truly valid and reliable, then Rocephin would not have any effect against the cystic form of Bb. She tested the highest at 1:128. All Rocephin would do is keep the Bb encysted. So, I don't agree that Rocephin is the "gold standard" in lyme treatment. Certainly, there are a plethora of lyme treatment failures utilizing Rocephin.
Obviously, if we are looking at Babesia [she did test negative by Bowen], we need another combination altogether. I do think we need to take another look at the Babesia possibility.
As far as the Flagyl goes, I was wrong in saying she was only 2 days. It was almost a week. I do not believe her reaction was an allergic reaction at all. I believe she did herx. due to the combination of Rocephin, Zithromax and Flagyl. So, I wasn't real clear about that in my earlier post.
Bea- where can we get this test kit for Babs? No, she has not had a SPECT scan. I do not think whatever she has is in the brain. She has not had any cranial nerve dysfunction nor any cognitive changes. Sounds strange since she did test postive for Mpn. in her CSF.
We did test for antibodies to myelin...twice...both times normal. Something intersting though...she did test positive for antibodies to acetylcholine. Could this be related to a toxin from Mpn. that was recently discovered?
We also tried glutathione for 4 months.
We are considering HBOT.
Nimzovich76- any ideas when you say "something beyond Lyme?" Sometimes I think I'ver racked my brain and covered everything. I would like as many perspectives as I can.
Have you checked out www.cpnhelp.org, the website for c.pneumonia? I don't know if her symptoms match up exactly but it's one more place to look.
Posted by seibertneurolyme (Member # 6416) on :
Mike,
Your mailbox is full.
Bea Seibert
Posted by mikej2323 (Member # 8913) on :
Parisa- thanks for the suggestion, yes, I have been on the cpn-help.org website many,many times. It's very informative. She did test negative for Cpn. a couple of months ago...but who knows...? One of the common treatments for the Cpn. is Zith.- although Flagyl is a key medication here as well.
I'm not sure this would be babesa or not. She never seemed to have "malaria-like" symptoms. If in fact babesia is involved, I highly doubt it is the culprit affecting the nervous system.
All autoimmune testing was negative, except for the antibodies to acetylcholine. I find this hard to believe it's a coincidence- given that she is paralyzed. For awhile there, we were thinking it was some sort of delayed botulism.
She did have several IVIg's, which of course, were unsuccessful. I'm sure it's not CIDP.
All SOD-gene mutations for ALS was negative as well as all neuromuscular disorders.
At one point, she was somewhat immunocompromised; very low NK-cells, low T-cell subsets and high B-cell subsets. I had read someone's research [can't remember at the moment of who it was] stating that this is consistent with mycoplasma infections.
We also found enormous amounts of toxic mold in the blood.
I don't know what to think about the QRIBb. I've paid attention to those here on this website that have tested as low as 1:32, and later tested positive by Western Blot.
Here's something strange:
It took 8 months for her to go from playing softball and riding horses to being unable to walk with a pretty steady progression of deterioration. [April-Dec., 2005]. In March, 2006, she was ventilated. In the same time period, 8 months, she had no progression at all. Then, in November, we start with 50 mg. Zith and increase it 50 mg. every 3 days until we get to 250 mg. This is when we started 50 mg. Flagyl for 3 days and then 100 mg. for 3 days. This is where we had to stop. She began producing enormous amounts of mucous/phlegm running from her nose and in her throat. She loses her appetite and stops eating. We have to feed her through her g-tube. At one point, we pulled mucous out of her nose that was "rope-like" and almost a foot-long!! This is not normal.
According to what I know about herx's, it's not uncommon to have a period of progression after medication begins. I really don't think bacterial infection can be ruled-out just yet. I believe the key medication here is the Flagyl
It's really, really hard when they are so sick to play the guessing game. You're trying so hard to save them. It's like when you lose a child in the store and you're afraid that you've taken the wrong direction and instead of finding them you're actually moving away from them.
My husband has been very, very ill with his Lyme/whatever. He is considered to be an unusual presentation for autoimmune disease and unusual presentation for Lyme. All I know is he went from a marathon runner to a man reduced to 58% lung capacity in six months.
I too spend a lot of time researching. We have tried some therapies that didn't work. We did do HBOT and my husband had a horrible herx?/relapse?/worsening of condition (you choose). It was my wonderful idea and I went through my own personal hell watching him get worse. This was before we knew about the Lyme. I thought HBOT was going to cure him. I do know that some people have gotten great results. After much reflection, I think (don't know for sure) that maybe the people who have had success reduced their spirochete load before they started, and they detoxed and/or their bodies could handle the toxins. My husband's case is not usual, of course.
Keep researching. I feel your frustration and know that you are racing against the clock. There is alot of knowledge here and hopefully the puzzle can be put together. I will keep your niece's case in mind when I do my research.
Posted by david1097 (Member # 3662) on :
Hi, Sorry for my typing, I know the spelling/typos are pretty bad at times. Still I hope the messages are decipherable.
A couple of more questions;
Do I understand correctly that the ventilator and walking problems are due to neurological deficit or are they due to overall weakness and perhaps spinal issues? This is important to know as Flagyl is a very very good drug for brain penetration but it also has anti protozoan capability.
How fast did the above symptoms occur. Was there any other symptoms like flu or cold during the start?
How long was ceftriaxone used, was there any positive effect either short or long term. Ceftriaxone is associated with treatment failure but only after it is stopped. For neurological and heart infections with lyme it is the drug of choice. That is why I am very concerned with the understanding that it had no effect. Its effect is limited with some infections but this is a pretty short list that is easy to check if in fact the drug was totally ineffective.
Are the pulmonary problems you mention that occurred after zith and flagyl persistent or do they clear up after stopping the drugs? Was she dehydrated during this time (possibly causing the mucous to thicken)? Also did they do a chest X-ray, what did it look like (there are specific tell tale characteristics of certain lung conditions).
Are their similar GI problems (ie heavy mucus mixed with bowel)?
Has the phlegm been sent to a lab for microscopic assay, perhaps something like Aspergillus fungus could cause this and perhaps be exacerbated by the flagyl allowing an overgrowth. Anitfungal agents are totally different than antibiotics and systematic fungus infection can cause all sort of strange symptoms, including boil like skin lesions. These infections are more common that one might think as the spores can be air bourn. As an example there are repeating reports of "valley fever" in the central valleys of California infecting immuno competent new residents that have not built up an immunity.
Does the Flagyl make things worse or make things better and over what time frame? In the course of treatment, things might get worse for a short time when treatment is started but once the initial kill is over with, things should get better as the antigens are cleared from the body.
What do the MRI's show. Are there any abnormalities?
From personal experience as well as what I have read and heard from those in the LLMD community, I would strongly caution against the use of Qribb as a definitive diagnostic tool. I have direct experience showing that even those not infected with Lyme have shown positive using Qribb. This was a big problem with the test and this limitation should be considered so as not to limit the range of differentials.
Do you have a list of drugs that have been used as well as test results (or even a general list of tests they were done and came back normal or otherwise). There are a lot of personal experiences on this forum and someone may see a pattern similar to their own experience. No one here can give a diagnosis but that can relay some possibilities that you may ask the Dr's look at. Given the Gravity of the situation as you describe it, I can't see a Dr discarding any suggestions that may have even marginal merit.
How did the whole decline start? What season was it and what has changed when she reached a period of stability?
Did she improve while in hospital and decline at home (i'm thinking maybe toxic mold or some other home based antagonistic chemical/bio agent on this one)
On the testing issue, are there any abnormalities in the regular blood tests (RBC, WBC subgroups, immuno globin groups etc). These MIGHT point to a particular underlying infective process.
There are lots more questions but I will limit it to these for now.
Please let everyone know so everyone can compare notes and maybe come up with some ideas.
PS: I would not rule out babesia or a protozoan infection as the cause of neurological problems just yet as these routinely cause severe neurological disease in human and animals. Different protozoan infection do not necessarily cause babesia or malaria like symptoms. An example is toxoplasmosis and Chagas. These are not resident in the RBC but do affect many organ systems including the brain.
[ 08. March 2007, 01:51 AM: Message edited by: david1097 ]
Posted by david1097 (Member # 3662) on :
I just read your last post, I did not press add reply until several hours later when I typed the one above so I guess you already answered some of the questions. Sorry for re-asking some of them
What is very interesting is the "toxic" mold in the blood. Do you know what type and did she take any antifungals to bring this under control? The combination of fugus in the blood, the effect of flagyl (which is well known to be a bad drug in terms of causing a fungus bloom), the phelgm all seem to point to that possibly being one of the problems. It likely is not the only problem though.
Posted by bettyg (Member # 6147) on :
mike, can't believe all that has happened to your precious niece since the last time i noticed your name and read her story.
1. ALLERGY ASSOCIATES, LACROSSE, WISC. ... did she ever get her blood tested their for allergies; environmental ....MOLD is one of their top things as well as rest of other natural things we're all allergic too?
2. did you ever try st. judes?
3. you want links for free air assistance, i'll go to my newbie links, and bring back what i have here for you:
4. FREE AIR FLIGHT INFO from SometimesDilly 10-06: Here's a great list of humanitarian orgs that specifically provide free airfare : http://tinyurl.com/nhepg
( liveforthechallenge.com ) that is a registry for "everyone who is currently struggling with medical difficulties."
Basically, those who register, pick out things that they need to survive, and people come around, read about you and your needs, and donate what they can. The perk to this is that people know exactly what you need.
The founder of this site is Diem, from Real World Road Rules Challange: Fresh Meat. She struggled with Ovarian Cancer, and wanted to help others ********************
http://www.freecycle.org/ - click on your state & check what is being GIVEN AWAY FOR FREE, no $$ involved!
do you have anyone who LIVES in niece's area who is a VOLUNTEER who files sick kids all over? check with them first so you can try to use him and him handy when you make an appt. wherever you take her.
these orgs have LENGTHY PAPERWORK TO COMPLETE! so start contacting them. i helped on an iowa woman and worked on putting finished typed project together and mailed it to the charity airflight folks. never heard until later it FELL THRU, they had NO ONE TO FLY HER THERE! had a plane, no pilot!! Posted by CaliforniaLyme (Member # 7136) on :
Re quickness of response in IV Rocephin- out of dozens of locals I know who have been on IV ONLY ONE has received big gains within the first month- ONLY ONE!!!
Posted by david1097 (Member # 3662) on :
This differes significanty from what I have seen here. Out of the dozens around here only maybe 2 pr 3 did not see quick response. It took a long time to clear up with the IV but it did respond. In the later cases of no response it was basbeia treatment that helped.
When rocephine had no effect on the majority of examples you have mentioned, what treatment ended up working and did they have antibiotic treatment prior to the IV?. I would not think that strain differcnes would accoutn for such a large differnce in drug response, but maybe?I suspect not though.
Posted by CaliforniaLyme (Member # 7136) on :
IV ended up working for EVERYONE around here I know- but NOT right away!!! Only one person I know ever went on for less than a month and ended up doing well- she is in complete remission. SHe had an MS diagnosis and got better within a month of IV Rocephin and then transitioned on to orals!!
Everyone else maybe was responsive but NOT a whole lot better within the first month- no way!!! Everyone I know had to be on for months and months and MONTHS!!!
Maybe it is our local strain but that is reality around here!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted by CaliforniaLyme (Member # 7136) on :
Nimzovich, you are wrong- because IV turned everyone I know around *eventually*- longterm.
You seem to not know any of the Lyme patients I know in California!!!
All of the Lymies I know needed WAY more than ONE month!!!! ANd in fact that one person- who is a female- Karie- required *3* courses of less than a month- she won against one of the Blues and was up on the California insurance webpage- she has since moved away- but even she, actually, was on *3* separate course of one month until FINALLY the third time she transitioned to orals instead of relapsing as before!!!!
Wow, you sound like IDSA members!!!
Posted by CaliforniaLyme (Member # 7136) on :
I began our support group 8 years ago and this is the truth!!!!!!!!!!!!! People go on for months- 5 months- 6 months- a year- 18 months- 2 years!!! And they get better- they walk again- their MS lesions clesar up- they throw away canes- but it does not happen right away!!!
Posted by david1097 (Member # 3662) on :
When I say quick response, I did not mean cured. There is a signficiant difference.
There is also the question of short or long term repsonse. With Lyme being a remitting-relapsing disease there might a short term gain that is large but on a longer time scale the overall response may not appear to be that good because good and bad times occur, sometimes spanning weeks. In any case, it sounds like you are saying that the results you refer to with IV are positive, it just might take longer to see big gains.
In the case of johns niece, she was on IV rocephin for 3 months with no effect at all (at least this is what I understand by a review of the past posts) 3 months on IV is pretty long to not see any change. I would tink that pretty well everyine would question the efficacy of treatment and thus the suspect disease. I am not saying that it was not worth a try, it just that I don't think you are going to find any other drug that will act faster on lyme as IV rochepine so I question the effect of some of the other lower tier drugs, especially if given orally.
I know about the horrors and bennefits of drugs like flagyl, but I have never seen anyone who got better on them alone without having gotten better faster on IV ceftriaxone, particualarly those who were very very sick.
As I had noted, I know of at least 3 cases of severe neurological disease where rocephine did not work. One worked with IV doxy, the other two with babesia/protozoan treatment.
Posted by Nebula2005 (Member # 8244) on :
If you don't know what it is you won't know how to treat it. If the lab tests are unreliable you won't know what it is. This is so frustrating.
You and your family are in my thoughts.
Mycoplasma? Has she ever been treated with tetracyclines?
Posted by mikej2323 (Member # 8913) on :
David- you must me reading different research then what I have read. Rocephin does nothing for CWD forms of bacteria AND the cystic form, hence the need for Flagyl OR a different antibiotic combination is required. These boards and the research are littered with examples of people needing to switch antibiotic combinations. Rocephin is *not* the answer for everybody, especially if there are cell-wall deficient forms of bacteria or cystic Bb.
Surely, the Brorson's and MacDonald's research has proven that.
You misunderstand what I have said. Rocehpine will kill the motile form, this is proven. The encysted or at least the protected form (were ever that might be, as different people have different views on this) is not affected by the rocephine. This being said, it is the motile form of the disease that causes the symptoms not the encysted /protected form. When the protected organisms emerge, that is when the symtoms re-occur as it the immune response that causes the problems. This is why taking steriods clears things up for a while.
If you look at the micrographs of the encysted form you can see oragisms sometimes multiply while in the dormant state but the mutliplcation is inside of the cyst. When they do this the body does not see them and no symtoms occur. As long as they are in that state you will feel better. It "appears" that they some how can sense that rocephine is out there and as a result they don't exit the protection. Flaygl might be able to get through the protection but this is not known nor is it known how flagyl kills the organism as it has binding sites that should allow it to act. It might be that it somehow increases the permiability of the protection thus allowing an antibiotic to enter (flaygl is not technically an antibiotic)
There is considerable debate on how to penetrate the protection. Flagyl is often quoted as being able to do this. Personally I think it is way over rated. I have have been and know others that have been on it for months with no significant effect. The relapse cycles (caused by the emergence from the protection) occur as before with out being affected.
In short I would caution about attributing to much to cystic form. It is a definate issue with long term cure but for short term relief I think it is a secondary factor. The LLMD's I have talked to treat this way also as their approach is to ADD flagyl/tinizol after the initial period of improvement has occured with the other drugs.
I need no convining that rocephine is not a cure all. I have been on it 3 times for a total of about 2 years out of a 5 year treatement so far.
Each time I relapsed. I have also been on 4 other IV drugs but with all honesty rochephine was always the best. I have also had Flagyl plus pretty well every other oral abx that is out there, usually while on IV. Improvement is slow, has its ups and downs but for me the trend has been to see an initial fast response followed by a much slower period of slow improvments. Usually after a new drug is started there is another fast response and the pattern repeats. This seems to be a common occurance with people Ihave talked to.
Have any of the Dr's that you have seen suggested any other things based on the symptoms? They are pretty severe and they have the advantage of first hand observation. Maybe there are a combination of disease factors at play. With neurological problems there are an almost imposible number of causes so one has to keep as wide a view as possible before narrowing it down. The pitfall is and always has been in focusing on one thing (much like many neirologists do with diagnosing MS) an in doing so missing the important signs by atributing them "atypical" indications and therefore ieffectively ignoring them.
Posted by mikej2323 (Member # 8913) on :
Ok, I think we're on the same page now...except for one point. There is empirical evidence that the cystic form CAN continue to cause damage by affecting cellular function. This state will allow the condition to persist and affecting adjacent cells, thereby a progression of symptoms.
Yes, I agree Flagyl probably doesn't kill Bb directly, but it does somehow damage the cyst so the other antibiotics kills the Bb while attempting reproducing.
I think you are dealing with more than one problem here, which is very difficult to treat.
Flagyl and tinidazole can cause a herx-like reaction almost immediately. They did with me when I even took a small dose, after being on other drugs that caused a build up of cysts. That is my interpretation of what happened to me. Some abx seem to cause more cyst formation than others. So, I would not rule out this class of drug in her case, based on that reaction. Start with the smallest possible dose. Tindamax (tinidazole) comes in tablet form, so you can whack off a very small sliver, and work up slowly. It seems to cause less side effects, like peripheral neuropathy, than flagyl (metronidazole).
The mycoplasma may respond better to the cycline drugs. It may also be necessary to get a mold specialist on board, or at least call one and see what you can learn. I can give you the name of one.
If she has lyme, coinfections, mold, then it is going to be a real challenge to deal with all this in a way that isn't too hard on her. I think these polymicrobial diseases are poorly handled by most doctors. And there really isn't any designated path for treatment that is already established. Just a matter of trial and error, I am afraid.
Posted by bettyg (Member # 6147) on :
david1097,
i know i get lost on every medical reply you post since you've chosen to write in long, SOLID BLOCKS paragraphs vs. cutting them in half so our neuro-lyme minds can try to comprehend/read them!
could you edit those really long solid paragraphs and cut them in HALF? for each of them? then we might be able to comprehend your posts.
i thank you for your consideration on behalf of the hundreds of us on this board with this problem! Posted by mikej2323 (Member # 8913) on :
Thanks Betty for all the good information.
I will say this though, recently we have been giving her lower doses of Rocephin [1g. to 250mg] and she has been "reacting" in a weird way. She loses her skin color, her eyes seem to roll back into her head, she's dizzy, and gets a headache. Could this be a herx? It seemed as if one night after giving her OJ it alleviated these symptoms, but the next night, after giving the Rocephin, it returned.
We are going to get a blood sugar monitor and check it more often. She was used to 2g. of Rocephin for almost 8 months, so if is a true herx, then I'm wondering why the lower doses would do this? She's been on 250mg. of Zith. as well.
Mike [email protected] Posted by CaliforniaLyme (Member # 7136) on :
Mike, I don't know re Herx...!!
David, I was on IV Rocephin for 6 MONTHS without gains and kept getting worse and in the 7th month I turned- and every day after I was more and more better until I was at 99% by month 9 and had to go off, transitioned to orals and have been at 99.9% ever since (but if I try and go off I begin falling over within days, very bad, but just amoxi for last 3 years now,m no side effects-) And we had one group member sick 9 years in full remission now who went 1 year without gains and then boom- and she got 100% better and has been off abx for 6_+ years now!!
Nimzo, theories be darned, what works works!*!
Posted by mikej2323 (Member # 8913) on :
Cal-lyme-
What kind of herx's did you have and what was the dosage? Were you on another abx. at the time?
Mike
Posted by david1097 (Member # 3662) on :
Mike, on the reaction to rochepine.. BE VERY CAREFUL ON THIS.
I say this from direct experience. I was on it for over 12 months with a portable pump that did controlled and very slow dose rates. Even late in the treatment when the dosage started it could at time have knocked me out several times. Basically you get cold, and pass out, the same effect that you get if you do a IV push of saline that is too fast or get air in the IV line. The effect only happens some times and is totally unpredictable as to when.
If you see that effect STOP wait a long time for recovery and then start agin at a slower rate. IT IS NOT A HERXHIEMER.
Posted by david1097 (Member # 3662) on :
Cal lyme
So I understand correctly,
You had no prior treatment of any sort with anitibiotcs, were on singular treatment with ceftriaxone for 6 months with no change in regime, continued to deline and at about the 6 month point saw quick improvments?
What were the major syptoms that responded?
What symptoms remained?
What was the dosage?
Did you change anything (drugs, food etc) during the 6 months?
(PS. Don't tell me of any co-infections yet, I would like to see what your pattern fits with before it is reveiled -if any).
Sorry for all the questions but I have never seen a similar situation so I am interested in getting all the details to add to my collection of histories.
Posted by mikej2323 (Member # 8913) on :
David-
We thought this was very unusual, especially since she was used to 2 grams for awhile and then 1 gram. Now, when we give it to her it's only 250 mg. and she has this reaction. We can't control the infusion, it infuses by gravity.
Posted by CaliforniaLyme (Member # 7136) on :
Mike, my Herxing on Rocephin was SLEEP. WHen I went on Rocephin it knocked me out dead cold. I was ASLEEP 22 hours a day for most of that first 6 months. I am not joking. It was like narcolepsy, I was unable to stay awake, felt pulled down into sleep, felt drugged, felt UNABLE to stay awake/ And I got worse, or Herxed, with everything, agony increased, weakening inscreasd, I just got worse and worse until month 7-
David, it hink you may not see cases like this because you are East Coast and here people don't GET IV until they are almost on deathbeds!! Seriously!!! You have to be really bad here to get IV and back East I think they give it sooner!!!
Cal lyme
***DAVID!!
So I understand correctly,
** Ok!
You had no prior treatment of any sort with anitibiotcs, were on singular treatment with ceftriaxone for 6 months with no change in regime, continued to deline and at about the 6 month point saw quick improvments?
** Nope, not at all!!! I was bitten by tick, got rash where bitten, was tested, tested positive locally, diagnosed locally by PCP, seconded diagnosis by Rheumie who treated me with 1 month Doxy, got almost 100% but NOT quite, begged for 1 more month abx but was told "too dangerous" but was told now had Post-Lyme SYndrome and allowed to decline for ONE YEAR (follwing that one month) with no tx (and same doc said "too dangerous" begged me to go back on abx after that year! but they did nothign!), THEN finally found LLMD put on orals for ONE YEAR of progressive decline and non-responsiveness- THEN when I could no longer walk nor drive nor cook nor remember 2 year olds name (I DID remember she was MY daughter though, not her name, but knew she was my kid!) was put on IV but continued to decline until could no longer rise without assistance had to be helped into tub kept falling falling and horrible chorea and THEN in the 7th month I went by the 9th month to 99.9%!! Bless my LLMD!! Bless Rocephin!!!
What were the major syptoms that responded?
********Um, I stopped weakening. I had been diagnosed at that point with "progresssive mutli-system neurological disease triggered by post-Lyme syndrome" (may those doctors rot in hell). I stopped having : progressive weakening leading on my left side, fibromyalgia, CFS, incontinence, vomiting attacks, MCS, chorea, incipient dementia, head-to-toe spoltchy rash, malar rash on face, had been having progressive numbness beginning to creep upwards from feet and it had reached upper calves where I could stick pins without feeling it- the earthquake feelings, the rolling ship sensations, the falling, the SLOWNESS (I don't hear that from many people but I got slowed down, I really got SLOWED down- took me 10 minutes, 15 minutes, to cross room leaning on furniture and walls) had developed a shuffling walk, hands were swollen crabbed claws arthritic and numb where no pain, no range of normal motion- t same time, lost balance suddenly all time would fall because of that, the micrography, RLS, the slurring when I spoke, the choking when I ate, the TWITCHES, the little jerky twicthes, the whole limbs contracting twicthes, the big body jolt twitches, the burning spots almost completely, the joint pain almost completely- 104 recurrent fevers- floaters all gone, hearing better almost normal, vision back normal
What symptoms remained?
******Chills, palpitations, head stabbing pains, left eye burning spot, hands still a little stiff and joint pain in finger joints- a little fog- and fever of 101- (I had that for 4 years btw!) swollen face above and below eyes- up to 2-3 centimeters swollen outward I was a monster- , edema all over body, chest pains, sleep disorder- early awakening sleep disorder, MVP, vagus nerve disoder when drawing blood causing fainting within 5 minutes after, high bp, very high bp decreased hearing when around surround noises low noises- hard to differentiate/focus on sound
What was the dosage?
*********2 grams daily for 9months/
Did you change anything (drugs, food etc) during the 6 months?
******************Only one. I took Ledum for a couple of weeks, a whole bunch of it, desperately. OH- and when the choking and swallowing was screwed up majorly I only ate ice cream and soup for a few weeks, had to let it slide down my throat while tilting head- without swallowing- only way to get it down- horrible- But this is one reason I believe I have TBE virus, because of ALS Parkie symptoms and because I did take Ledum a couple of weeks before I turned!!! And the Russians found it inactivates TBE viruses-
(PS. Don't tell me of any co-infections yet, I would like to see what your pattern fits with before it is reveiled -if any).
***You've got to be able to guess re what coinfection was left!!! Jeez*)!*)!
Sorry for all the questions but I have never seen a similar situation so I am interested in getting all the details to add to my collection of histories. --------------------------------------------------------------------------------
*** MOST amazing thing Rocephin did- which surprised me and I didn't even notice- ex husband did when we were hiking and I jumped up on to a log and crossed a stream- my lifelong fear of heights has been gone ever since IV Rocephin!!!! GONE!!!!!!!!!!!!!!!!!!! It seemed natural to do that and has ever since- it was a visceral thing before- and it is GONE!!!!!!!!!!!!!!!!!! Makes me wonder how long I was infected before that RE infection>? Because when I was 21 they thought I had lupus and kept testing my ANA for 6 months- and then the lupus went away with abx for walking pnemonia!!!! Completely gone!!! SO I wonder- and because I got SO bad SO fast- u nlike others- I got so bad-
Posted by Sojourner (Member # 9424) on :
Cal lyme--that is quite a story and thanks for sharing it. It illustrates my point below.
I am uncomfortable with these absolutes that I have been reading in this thread regarding reaction to treatments and whether one has lyme or not.
It is possible that each individual reacts differently to the drugs used to treat lyme and also that different strains of the bacteria react to different drugs in different ways.
There are just too many variables to say, "it takes two weeks to have a lyme herx and if you herx prior to that it is not lyme that is being targeted" That is poppy cock! If we knew enough to be that sure about herx reactions we would be able to cure lyme--bing, bang, boom.
We don't know enough to throw these kinds of claims around- DAVID1097 wrote, "The 'cell wall deficent' form of Lyme. or encyted Lyme is benign during the cyst phase.
Where is the research to back that up?? I think that is a somewhat outdated view of the cystic form of borrelia. Geez, especially when we are talking about an ALS presentation of Lyme.
DAVID1097 also wrote, "You mention that one day on Flagyl causes problems. This is intersting in that Lyme does not behave like this. it take s a few days for a drug to kick in with Lyme"
How do you know for sure?? This is certainly not the case in the majority of lyme patients who take flagyl or tini---Many, Many feel the effects quickly.
Finally, Nimzovich76 wrote, "If IV rocephin didn't have a considerable effect even within days, then is time to look elsewhere, I gave I.V. Rocephin a month and didn't notice significant changes, that's when I stopped and went a different path."
So now which is it---herx too fast, it's not lyme your're treating, or do not herx in a few days so you're not on the right path. Can't have it both ways!
In my opinion, these statements are frivolous and irresponsible.
I am sorry Mike for your troubles--I certainly don't have the answers--I just can't stand when others write as if they do.
Posted by david1097 (Member # 3662) on :
John,
On the IV, you can slow down the drip rate. the drug has a fairly long half life so even it is slowed to infuse over a few hours it is not that big a difference.
As far as the reduced dose goes, she may be weaker now than she was before, similalry, there may be changes in the blood flow pattern to the brain due to a number pf possible reasons, either of these could easily account for a hieghtened sensitivity to the drug. The symptoms you mention that seem to occur in reposnse to the drug infudion would, to me, be very scary and I would take great care in dealing with it.
What happens if you stop the IV for a few days? Lyme takes many many days or weeks to start to come back. This is why the popularity of the pulsed antibiotics. If something does come roaring back within a few days then you are unquestionably dealing with something other than lyme for those particular symptoms. (See Dr' B's presetnation for this point of view) There ar a lot of possibilites in this regard.
On a different note, were they any MRI's or brian studies? What did they show?
Posted by david1097 (Member # 3662) on :
Just to clarify on this
People ask for suggestions, thats all I provide. If others provide suggestiosn I don't agree with, I don't say "that statement is wrong or irresponsible", I just provide an alternate suggestions and a reason why. I always try to explain why, thats why my posts are so long. What I don't particulalry like are suggestions that have no explaination. There are no absolutes in the field (except dead or not dead, but even this is debated) so that means everything must be in the grey zone. Knowing how to make sense of the greys and then make decisions on this interpratation is what I feel is important.
Based on this it appears that perhaps my exaplinations where lacking as to my suggestions. So here is a second attempt.
In terms of abx reponse, we are looking at a possible situation that involves many variables including possible multiple co-infections and someone who continues to decline while on intensitve anitbiotic treatment. The question shoud not be why isn't the lyme treatement working, it shoulfd be what else besides lyme could it be? Maybe it is lyme maybe it isn't but the bottom line is unless you consider other possibiltiies you will never find it.
So based on this concept what can be made of the drug response so far? First,ILADS and IDSA both agree that with coinfections the symptoms are much worse, worse infact than lyme and the other infection alone so given the fact that the poor person is bedridden and needs a ventilator I woudl bet that co-infections are involved.
So now how do you figure out what else is involved? Tests are not that good and may not exist so these are no good, all you have are the symptoms to go by as well as the respnse to the treatments thus far. For neuro symptoms there are literally 100's of possible causes so the symptoms unless they are verys specific won;t help you. So whats left?
So it thats the case,consider this; Lyme, again by ILADS account produces a herxhimer delayed by a few days. Other diseaes do not, for example; syphilis produces this reaction in a few hours. Bartonella also produces a herhiemer reaction and so do a number of diseases which are for the most part hidden from a vigourous immuue response. So lets consider the case of a person who:
is very sick with symptoms that could be caused by lyme and or co-infections,
does not have very strong evedence of lyme infection,
does not have the text book signs of lyme
and finally when that person is treated with anitbiotics, the person gets a herxhiemer reaction within a few hours. What does that person have?
Do they have lyme because they have a possible indication from blood tests or do they have something else that produces a more rapid herxhiemer and that may have weakly cross reacted with the lyme tests but for which was never tested for?
My vote is for the latter as it is more likely to be true than have an "atypical" herhimer from some sort of "atypical "lyme.
As a next step consider if this person did not respond to good broad spectrum antibiotics but reponded to a drug that is known to be good for say a non bacterial infection? Would this mean lyme or would it be a a non bacterial infection?
Again my vote is that it is not lyme but in fact non bacterial, especially since the herxheimer pattern did not match that for lyme.
I can continue but I think you get the idea.
Now on the cystic and CWD form. If this form can cause severe disease (as in this case) how is it possible that peopel that ultimately relapse after a few years after treatemtn get well at all prior to relapse. Not everyione has been given flaygl so one would reasoanbly assume that there are are sequestered "cystic" forms lurking. In fect, many many poeple just got ceftriaxone, recovered and years later got sick again. Presumably the reason they got sick was that the cystic form of the disease was not irradicated. Still they made a full recovery at least for a while? My guess is that the systes form does not produce much in the way of symptoms, that is until they emerge fromt hat form.
There are many intracellular diseases, all exhibit the interesting pattern that as long as they stay in intracellular hiding they do not cause any symptoms. This preseumably is because they do not produce endo toxins while in that state. Once they emerge from that state and are broken down by anitbodies or antibioticss, then all sort of toxic waste is left, these cause the symptoms... bad ones. I alrea read somewhere (if I recall correctly) that the motile lyme bacteria does not produce pyrogenic toxins. This woudl furhter support the concept that when the bacrteria is encapsualted in a cyst that it produses no effects. Fionally in some countriews where borrelia infections are more prevalent (some third world countries), the Dr's are taught that once infected by brroelia you are infected for life due to the cystic form. They also are taught that the only aim f treatment is to keep it in that form.
As a practicle example consider another spirocete, lepto spira. When ths infects horses, it produces no particuallry bad symptoms until it is killed by drugs or antibodies. At that point it causes a sort of optic neuritis. Lepto sprira can also stay sequested in a protected state (likely a p spheroid of some sourt) and while in that state also produces no symptoms. Im my opinion, it is reasonable to assume that lyme is similar. I say this because peopel can be infected for years, with no particuallry bad symptoms but once treated they get a herxhimer reaction and then get anothor one when they take flagyl. To me this tends to show that the bacteria is able to evade the immune system and thus produce minimal symptoms and when it is in the cystic state it produces even fewer symptoms. Its only when the lyme is killed either by the body, the antobiotic or by the flagyl do you get a severe reaction.
Based on this, given super severe symtoms in Johns case, I think it is quite reasonable to assume that the cystic form is not the cause of the severity of the problem. Maybe it might contribute but my guess is that the problem lies elswhere.
Posted by david1097 (Member # 3662) on :
Cal lyme
In reading this, do I understand corerctly that the first round of antobiotics did create a positive response? If so would count this as the antibiotics working.
I was refering to antibiotics resulting in NO reposnse right from day one. I know for sure that once you have had orals, the effect of ceftriaxione is greatly reduced, likely because the orals did part of the job already, i Also know that once you replase it is mucgh harder to recover, even with IV so a longer course is needed.
In the case of johns niece, the problems appears that she never had any improvement from antibiotics at any time, even from time 0. It appears that it is not that she received previous treatment and relapsed, or recieved prior treatment and made some progress. She made no progress at all.
As far as the california cases, What I have said about antibiotics (ceftriaxone was mentioned as it is one of the strongest) is again not applicable as if they received prior treatmetn and either improved or slowed the deterioriation then obviously the antibiotics had a positive effect.
Do you know any one that upon startnig antibiotics had NO effect(no slowdown in progreesion and no improvement) in the short term but after 3 months had a step wise improvement? This is the situation I am saying I have never seen.
Posted by lymemomtooo (Member # 5396) on :
Mike I am just reading this but my first thought thru this was mold and I see someone, David, I think also suggested it.
Check out chronicneurotoxins.com or do a search for mold warriers. There should be some info on the site.
With mucous, etc, it just makes me think mold infection. Has anyone done a mold test on the home or heaven forbid, the ventilator? She may be constantly re-contaminated. Make sure someone looks for all types of possible moisture/leaks, etc.
It may be a big piece of the puzzle. Good luck. NO child or parent should have to go thru this Hell. lymemomtooo
ps. My daughter was also dropped by a Dr, without notice during a critical emergency situation.
Posted by Sojourner (Member # 9424) on :
I believe my reading comp. skills are just fine.
I stand by my assessment-----stating that no response to IV Rochepin after a "few days" = not effective and not lyme is irresponsible.
Oh and I forgot, there are so many other options to treat a kid on a respirator with ALS symptoms. That's right they should pursue all those other options and NOT Lyme.
Thankfully, I think Mike is much smarter than that.
What exactly is your objective? Muddy the waters perhaps--Personally, I am sick of it.
Have a nice evening. Posted by CaliforniaLyme (Member # 7136) on :
Sojourner I agree- I found those disturbing too!
David, yes and NO. They initially got me almost well when all I had was joint pain, IMS, fibro and FMS. THEN I declined WAY WAY WAY worse than that. II was 1,000,000 times WORSE. And they did NOTHING for a year of orals and 6 months of IV. I was put on abx and they THEN did Zip, nada, NIL!!!! After having almost cured me!!!! We switched abx for a whole year and NOTHING!!! I just got WORSE and WORSE!!! I was on different orals and they did NOTHING!!!!!!! And then Rocephin- I waited- and wiated- I thought for sure by month 3- then 4!!!! I gave up.
OH big diff!!! At month 6 I had groshong put in- until then was shoulder line to heart picc- but then had groshong put in and i told that surgeon, "I am not going to get well, why am I doing this?" Tears were streaming down my face but I was not even aware I was crying. He said, "Everyone says that but your doctor is a miracle worker. People come in here and then- they get better!" 2 months later I called rather prematurely to ask him, "Doc Surgeon, can I jog with this i n?" I did not know it would take me over a year to get THAT strong again. IAnd he said, "I TOLD you so!" HE had faith in my doc when I no longer did. And my doc was right!!! I did get better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And that happens to others too- all the time! I see it. It is great to watch!!!!!!!!!!!!!!!!
Posted by CaliforniaLyme (Member # 7136) on :
p.s. I became aware I was crying because that surgeon began wiping my face off with a Kleenex for me while he was talking to me!!! He was a sweetie!!! ANd to both him and my doctor there was no doubt thsat I would get better- they had seen it before0- it was not new to them- and now after years int he TBD community it is old hat to me too- it does happen all the time- with time-
Posted by mikej2323 (Member # 8913) on :
David- BTW, my name is not John, it is Mike.
Sojourner- I agree with your assessment of the preconceived "absolutes" with the course of Lyme's and its co-infections. Just as there are numerous different clinical presentations, there are probably numerous different reactions to the medications. Everyone responds differently. I totally agree with you...well said.
Lymemomtooo- thanks for the suggestion. I am familiar with chronicneurotoxins.com and Dr. S. Mold Warriors. The mold was found in her blood quite some time ago and before she started on the vent. They moved out of their house while it was remediated. I'm told that IVIg's and simply getting out of the environment is the treatment. I don't believe the mold is the causative factor here, but I do believe it played a role. This girl is an identical twin, who also tested high for toxic mold in her blood. Why did two different children react so different to similar amounts of mold in there bodies? My theory is that either the borrelia, babesia, mycoplasma or whatever it is she has, altered her immune system enough to make her sick.
Which of course leads me back to the treatment failures using Rocephin. I don't believe Rocephin is the "cure-all" for neuroborreliosis, despite its many successes.
[ 14. March 2007, 10:33 PM: Message edited by: mikej2323 ]
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