Topic: Question about Remicade & Lyme (remember "Dying 13 yr old girl" thread?)
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Hi Guys,
Do you remember the girl I've posted about over this last year? On a thread with a title like "Dying 13 year old girl". She weighed 53 lbs or so at that time.
You all were so kind, some of you sent her gifts, some of you offered her your LLMD appt. So, so kind.
She's still being seen by a Ped. Arth doc near me and the now the famous ped LLMD in New England too.
My friend, the girl's mom, has asked me to post a few questions for you. If anyone can help, it would be much appreciated!
-----------------------------
"Well I hate to say it, but my daughter's 1st remicade treatment is being MOVED UP.
Her latest MRI showed severe joint damage to her hips to the point she may never straighten, and we don't do emergency infusion now and get the ball rolling, they said she may never walk again.
I'm a mess!
Pediatric Rheum. Arth. doc says he wants her off the cipro and bactrim right of way, as the cipro has too many side effects that can prohibit the remicade to work to its fullest potential.
And he insists some of the stomach pains and headaches are from the cipro that the drug is illegal to be used on anyone under the age of 18.
For now, I've agreed to stop giving any lyme meds or homeopathic alternatives until we get at least two remicade treatments in her.
But yet I'm uncomfortable w/stopping the lyme meds for too long.
Can you please see if there is anyone on lyme.net that is seeking remicade treatments and also treating lyme at the same time, and how they are treating it and what the advantages and disadvantages may be."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Remicade is an immunosupressant. We are all different and I don't know specifics in the little girls case. I took it for crohns and began having awful neuro problems. It was like a bomb blew up. I did not know I had Lyme and friends at the time. Please have her check and see if she is positive for the anticardiolipin antibody. I ended up having that and was sent to Hopkins for lupus after remicade. The lupus dr said remicade plus the anticardiolipin antibody are a big no no! Like I said I don't know her situation so I can not make any recommendations . I can just speak for my own situation. I have neuropathy and never gained temperature feeling back in my hands and feet. This was five years ago. Good luck to the little girl. My heart breaks for her and I am praying for her recovery.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
My recommendation is though to have her tested for this antibody if she decides on the remicade. Remicade is not a drug you can start and then go back to . I can't remember why. My case is different then hers though. I pray her hips can move again.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Right... I would be very against the Remicade for the reasons gatorade girl posted..but we don't know the whole medical history and really can't comment on what to do.
I wonder why she is on Cipro?? I think it's dangerous too. Does she have bart?
The ped dr in New England agrees with the Remicade???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My GI doctor said "NO" to Remicade when any type of infection is involved.
Again, I don't know the whole medical history. When Lyme Disease is involved or co-infections the situation becomes very complex and the risk/benefit factors change substantially.
I had Remicade a number of times while I was undiagnosed. It didn't help my symptoms but it also didn't kill me. However, it definitely contributed to my being sick a lot longer.
In the end, just like Steroid us, you have to weigh the risk to benefit.
A second opinion doesn't hurt either. Consider all your options.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
It sounds to me like this child has two doctors with completely opposite views of what should be done. I don't see how this can work. You either have to go with one or the other. I don't understand why this is happening. Someone has got to make up their mind about what course of treatment to pursue, not gallop off in two directions at once.
I was worried about this from the get-go. Parents who have to be cajoled into seeing the need to treat lyme disease are never entirely committed to what is a very difficult treatment plan. They have to see it for themselves and not let anything stop them. I know people mean well in trying to help others, but what we are seeing here can be the unsatisfactory result.
Posts: 8430 | From Not available | Registered: Oct 2000
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Lou, it's called divorce with a very sick child stuck in the middle.
What would anyone (any parent, any friend, any concerned person) do in this situation? We can only do the best with what we've got.
Wiping my hands of this girl is not an option for me.
I understand your questions, but if you knew the extent of devastation this mother and daughter are facing, I doubt you would consider asking them.
This is not the time for questions, only action. And constant prayer.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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And what action would that be? This is a confused mess, and although you have tried to help, you cannot save a child whose parents do not agree. This is the unpleasant truth. Anyone who gets in the middle of a fight between parents over a child is asking for trouble.
If I were a lyme doctor, I would bow out.
Posts: 8430 | From Not available | Registered: Oct 2000
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Maybe calling Centocour (makes Remicade) and asking them if Lyme Disease is a contra-indication for the use of Remicade would convince the Rheumy to not use it?
Yes, she also should be tested for the Antiphospolipid antibodies.
I've had many doctors INSIST I have Crohn's, despite my symptoms not fitting in with that diagnosis. They also wanted me to take Remicade. I refused, so they fired me as a patient. ??? I thouhgt we had RIGHTS as patients to refuse any treatment??
Now that I know I have Lyme/coinfections, I'm convinced that I did the right thing refusing the Remicade. Heck, all the other immune suppressing meds they tried me on (Methotrexate, Azathioprine, Steroids) made me get sicker in general or did nothing to improve my gut symptoms or aggravated the symptoms I now know for certain to be from Lyme/coinfections...
Ok, I'm rambling so I'll shut up now...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Lou, please know that I'm not looking for an argument. I would just end up crying and emotionally I can't afford to do that right now. Of course I understand your concerns.
But what action? Well, if my friend asks me to post a question for her, so she can get some direction/answers from lyme experienced people about how to best help her daughter, then I'm happy to do that.
I'm not getting in the middle.
And the Dr. knows what's going on. He's met both parents. There's no blindside. And he's chosen to not bow out but to step up.
If you could only meet this beautiful girl, you would see that the fight I am in is not BETWEEN the parents but FOR the girl.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Taking biologics, like Remicade, is contradicted with lyme, because it suppresses the immune system.
However, it is also important to stop progression of the rheumatic disease to prevent further deterioration of the joints, as well as reducing inflammation.
My rheumatologist is a well know AP doctor, who uses antibiotic therapy to cure rheumatic diseases. He has been known to also prescribe traditional drugs like Remicade, when it's necessary to stop disease progression.
I understand the concern with a biologic, and going off lyme protocol. I would call the famous pediatric lyme doc, and get his input. I would also cross post this to www.roadback.org/forum, and ask for input. It's a website for antibiotic therapy for rheumatic disease, and many have lyme-induced diseases. They have experience with traditional rheumatology and LLMD's.
One medication that is frequently prescribed for RA is plaquenil, which is also a lyme drug. It's anti malarial and an anti inflammatory. Has that been tried?
Stopping disease progression is critical. It may be necessary to try Remicade to reverse the progression, but it should be a last resort.
There's no question that these two doctors have opposing philosophies and treatment protocol. It's a difficult situation to say the least.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Here's a post from www.roadback.org regarding lyme and biologics:
Postby Maz � Tue May 18, 2010 5:55 am As a patient with RA/Lyme, it's always interested me that some of the warnings on the newer biologic drugs, like Enbrel, Humira and Remicade include the risk of development of MS or Lupus-like reactions and this new study out of Germany explains why this might be the case, linking these reactions to underlying Lyme disease:
Borreliosis mimicking lupus-like syndrome during infliximab treatment.
Both of these studies present strong cases for ensuring a diagnosis of Lyme is ruled out (even seronegative cases) prior to starting any form of immunosuppressive therapy.
A further German study from 2000 indicates that intra-articular steroid injections also delays progress on antibiotic therapy for Lyme arthritis in children and adolescents (likely applies to adults, too):
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Thanks, you guys are awesome!!
nspiker, thank you, thank you!
Any more info is certainly welcome!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I think it's pretty clear from posts here that the Remicade may be a bad idea. Isn't it possible that the joints may heal when the lyme is treated? Maybe she is past that point. I can't offer any advice, but I agree that more opinions would be prudent.
What does Dr. J say about the Remicide? He is soft spoken so will probably not push it if the parents want to go that way. It sounds like we know the girl has lyme and needs lyme treatment but do we KNOW she needs the other treatment? Seems like a risk to me based on what others have posted.
posted
This is an extremely difficult situation on so many levels. My heart goes out to L. It is bad enough having a desperately sick child. Throw in a divorce and a disagreeable ex-husband, and the situation is compounded tenfold. Add to the mix the best ped LLMD and a ped rheumatologist, who might be good, but perhaps doesn�t see why an infectious component to J�s condition should be considered.
I don�t know the entire medical history (and even if I did I�m not a medical professional). But as a mom with sick kids, a few things crossed my mind when I was reading what L wrote:
1. I am not sure that naturopathic remedies need to be discontinued. a. Does J have a naturopath who can get involved here and put his/her 2 cents in?
2. Does the severe joint damage indicate bone loss? a. If so, I hope J is on adequate levels of Vit D3 (a good idea regardless). Adequate is relative�likely that would be something that both these docs agree on, and a naturopath would disagree with them both. And I hope J is getting enough calcium and magnesium to support her bones as well. b. I would guess that there is little to no bone growth because J has not been very mobile and is severely underweight. This is an issue that L should keep in the back of her mind to be addressed at some point after this crisis.
3. Is the joint damage because of JRA? If so, what exactly does that mean? Are the joints twisted, stiffened?
4. Because J is so underweight, I wonder if IV nutrition (like TPN) in addition to her regular diet would be beneficial
5. When L was told an �emergency infusion� of remicade was necessary, what timeframe does that encompass? A week, a month, 3 months, a year? This makes a huge difference in terms of gathering more information that will assist in making an informed decision.
6. If I were L, I would have a phone consult with the LLMD. A huge part of why he is so valuable is because of his advanced age and experience. He was a pediatrician long before becoming a LLMD so he knows much more about all things pediatric than those half his age. My questions for him would be:
a. Does he think J�s RA is b/c of Lyme? Mycoplasma? (I ask b/c after searching I see that Lyme and Myco are the infectious agents that could be implicated in RA) b. If so, could treatment for Bart be postponed for a bit? c. Could J be treated with doxy/mino/tetra for Lyme and zith (?) for Myco? (J could have myco, but from what I understand the testing is very unreliable so it might go undetected) d. What are the possible ramifications/scenarios if J were to receive the remicade? e. What are the possible ramifications/scenarios if J were NOT to receive the remicade? f. What has been his patients� experiences with remicade? Best? Worst? g. What are the odds that remicade will help her? h. What are the odds that remicade will make her worse? i. Are there alternatives to remicade? What are they and how do they compare? j. If this were his child what would he do?
7. If I were L, I would also have a phone consult with the rheumatologist. I would start off by politely telling him that he is not being asked to agree or disagree as to the possible infectious nature of J�s condition nor is he being asked to agree or disagree with the LLMD�s opinion. I�d express that as a parent she is exploring every avenue in order to get her daughter well and isn�t interested in getting involved in medical debates. L could add she would appreciate it if J�s history of infections/TBD be recognized. I�d ask him:
a. If he would be open to J taking doxy/mino/tetra as those abx have been used for rheumatic conditions (roadback.org). b. If he has considered the possibility that J�s JRA could be the result of a mycoplasma infection. Would he be open to having her treated for myco (zith?) c. If he would be open to J continuing on homeopathics for Bart since <supposedly> homeopathics do not interfere with meds. d. What are the possible ramifications/scenarios if J were to receive the remicade? e. What are the possible ramifications/scenarios if J were NOT to receive the remicade? f. What has been his patients� experiences with remicade? Best? Worst? g. What are the odds that remicade will help her? h. What are the odds that remicade will make her worse? i. What are the odds that remicade will do nothing? j. Are there alternatives to remicade? What are they and how do they compare? k. If this were his child what would he do?
8. Because of the nightmare we have lived with �stomach pains� I do take exception to the rheumatologist�s assessment: �he insists some of the stomach pains and headaches are from the cipro� �Stomach pains� can happen from just about anything from A to Z. So if J�s �stomach pain� goes away when the Cipro/Bactrim is discontinued he will be correct and I hope that is the case.
However if he is wrong and J�s �stomach pains� don�t go away, here�s my 2 cents: �Stomach pains� is a misnomer and a pleasantly neutral simile for the severe and disabling GI pain and damage that can occur from TBI.
I also do not understand his assertion that Cipro is �illegal to be used on anyone under the age of 18.� Wouldn�t a lot of docs be in jail if that were the case? This reminds me of when we were told by a mortified family doctor that Factive was banned in the US (yet CVS had no problem dispensing it).
As far as the assertion that headaches are attributable to Cipro, anything is possible, as headaches can also happen from anything A to Z. But headaches are a very common symptom of TBI.
9. I would imagine that having a sick daughter and going through a divorce equals very limited finances for L and perhaps losing health insurance. I would strongly encourage L to investigate federal programs like Medicaid and food stamps. I would also encourage her to look into local foodbanks in her area. This kind of situation is exactly why such programs were developed.
10. I would ask that everyone here keep L and her daughter J in their prayers. And keep 17hens in those prayers as well. She is a wonderful friend. And we all know those are hard to come by.
And because I haven�t already written enough, here are some links that might be helpful to L:
And here�s the text from a roadback.org article. I tried to bold or underline the things I thought were relevant, but wasn�t able to:
Why Test for Mycoplasma? Drug Response By Strain. The evidence that an microorganism is involved in autoimmunity is not a new idea, and the list of diseases with a possible infectious connection is growing: ulcers, hypertension, multiple sclerosis, scleroderma, lupus, rheumatoid arthritis, juvenile rheumatoid arthritis, cancer, chronic fatigue, fibromyalgia, athlerosclerosis and kidney stones. Molecular mimicry has been considered as a possible explanation, but in 1997, a new idea was reported in Science News1. Benjamin J. Segal of NIAID in Bethesda and his colleagues found Interleukin-12, a more universal mechanism than molecular mimicry, may be the activator. When macrophages are activated in response to infections or bacterial debris, they produce Interleukin-12 which stimulates the immune system into producing antibodies specific to the offending microbe. BUT - Interleukin-12 can also stimulate self-reactive immune cells which might be at or near the site of infection or which might have similar proteins, causing these "self" cells to turn against the body. Research is primarily looking into how to stop or reduce these elevated immune system components and many arthritis drugs suppress the immune system, a tradeoff between beneficial effects and toxic side effects - a tradeoff fewer and fewer patients are willing to risk. Why not look for, identify and treat the human pathogen that may be initiating the entire process? A primary candidate is mycoplasma. A connection between various rheumatic diseases and mycoplasma can easily be found in medical journal literature2. Testing and finding mycoplasma, although important and helpful, is not as easy as identifying a bacteria. Mycoplasma is intracellular, is in tissue more often than blood, is difficult to culture and grows slowly. It takes a lab with special skills to do an accurate mycoplasma test. Testing can be done in 3 ways: PRC testing to identify the DNA of the mycoplasma, testing for presence of mycoplasma antigen or looking for mycoplasma proteins. Patients can have more than one strain of mycoplasma as well as other microorganisms, all of which may be involved in the rheumatic disease process. Sometimes multiple strains of mycoplasma respond to different drugs as in the case of M hominis and U urealticum. Hominis responds to tetracycline drugs and does not respond to erythromycin; U urealticum's response is exactly the opposite. If both are present, 2 antibiotics must be prescribed to eliminate both organisms. Strep and/or other bacterial L-forms can also be present and if untreated, exacerbate the RD symptoms. Some of them respond to penicillins, others have no response to penicillins. These are just a few of the reasons why testing for organisms is important and helpful in choosing the appropriate antibiotic. Another unrelated reason for testing for organisms is that antibiotics are the drugs of choice to treat many of these organisms even though they are not necessarily the drugs of choice for the rheumatic disease being treated. If you get a positive lab test for organisms, you will have a better chance of being reimbursed by insurance carriers if you are treating the organism as your primary diagnosis and the RD as the secondary disease. References 1 J. Travis, Microbial Trigger for Autoimmunity? Science News, June 21, 1997, Vol 151, 380. 2 see Journal Article list available from The Road Back Foundation, www.roadback.org under "studies" area in main menu. 3 J L Lin, Human Mycoplasmal Infections: Serologic Observations, Rev of Infec Dis, 1985; 7:2, 216-230 4 SA Poulon, RE perkins, RB Kundsin, Antibiotic susceptibilities of AIDS-associated mycoplasmas, J Clin Micro, 1994; 32:4, 1101-1103. 5 KB Waites, GH Cassell, KC Canupp, PB Fernandes, In Vitro susceptibilities of Mycoplasmas & Ureaplasmas to new macrolides and aryl-flouroquinolones, Antimicrob Agents and Chemo, 1988; 32:10, 1500-1502. Susceptibilities of common mycoplasma strains to antibiotics: S=susceptible; R=resistant; M=marginal response; S/R=mixed response M. pneumoniae (respiratory tract) S minocycline S erythromycin S doxycycline R cephalosporins S difloxacin S clarithromycin S azithromycin S/R clindamycin S/R ciprofloxacin M hominis (genitourinary tract) S minocycline R erythromycin S doxycycline S cephalosporins M difloxacin R clarithromycin S azithromycin S clindamycin S ciprofloxacin U urealticum (genitourinary tract) S minocycline S erythromycin S doxycycline S temafloxacin S/R difloxacin S/R clarithromycin S/R azithromycin R clindamycin S/R ciprofloxacin M fermentans (incognitis) (genito-urinary tract & oropharynx) S minocycline R erythromycin S doxycycline S temafloxacin ? difloxacin ? clarithromycin ? azithromycin S clindamycin S ciprofloxacin Some mycoplasmas, such as M. hominis and U urealticum are often found together and they each are resistant to the antibiotic which eliminates the other. Usual colony site locations can also be helpful in choosing an effective dose of antibiotic as some sites take a higher dose than others. Commercial mycoplasma test kits often give a false positive result and are not recommended. A negative test is not unusual at the start of treatment. A second test approximately 4 weeks later often gives a positive result. References 1 J. Travis, Microbial Trigger for Autoimmunity? Science News, June 21, 1997, Vol 151, 380. 2 see Journal Article list available from The Road Back Foundation, 4985 N Lake Hill Dr., Delaware OH 43015, USA. 3 J L Lin, Human Mycoplasmal Infections: Serologic Observations, Rev of Infec Dis, 1985; 7:2, 216-230 4 SA Poulon, RE perkins, RB Kundsin, Antibiotic susceptibilities of AIDS-associated mycoplasmas, J Clin Micro, 1994; 32:4, 1101-1103. 5 KB Waites, GH Cassell, KC Canupp, PB Fernandes, In Vitro susceptibilities of Mycoplasmas & Ureaplasmas to new macrolides and aryl-flouroquinolones, Antimicrob Agents and Chemo, 1988; 32:10, 1500-1502. The Multiple Properties of Tetracyclines While antibiotic therapy is based on the concept of an infectious etiology, tetracyclines have many properties. Anti-inflammatory Action Of obvious benefit would be the anti-inflammatory effect of tetracyclines. Since many forms of arthritis are inflammatory in nature, it is a standard part of therapy to prescribe some form of NSAID to control this symptom. Collagenase Inhibitor Tetracyclines inhibit certain enzymes such as collagenase, the host-derived enzyme responsible for the breakdown of collagen which is released during the inflammatory process. In a 1990 NYS Dental Journal1, L. M. Golub concluded tetracycline treatment was useful in the treatment of periodontal disease but also "for medical diseases that are characterized by excessive collagen and connective tissue destruction."1 Robert Greenwald, M.D. of Long Island Jewish Hospital, found minocycline reduced excessive collagenase activity in diseased joints of patients with severe rheumatoid arthritis.2 These findings were confirmed in 1990 by David E. Trentham, M.D. in two animal models.3 Normalizes Bone-forming Cell Activity Tokyo microscopist, Sasaki, found tetracycline normalized the morphology and activity of osteoblasts, bone forming cells, in diabetics.4 Potent Chelating Agents HW Clark, PhD. noted "tetracyclines are potent chelating agents, and as such have been found to act as: anti-inflammatory (electron scavengers), immunosuppressive, anti-metalo-enzymes (anti-collagenase & anti-lysosomes), as well as antibiotic. Consequently the parenteral (IV, IM) or oral (between meals) administration could have a pronounced effect on their chelated state (Cu, Fe, Zn, Ca, etc) with variable dissociation constants that would determine the reactivity."5 Dr. Clark continues, "Bioassays for tetracycline levels in fluids and tissues measure the bacterial antibiotic activity and do not account for the variety of other activities that would be dependent upon the dissociation constant of the chelated divalent metals. Thus when tetracyclines enter the blood or tissues as the sodium salt, it may exchange with the iron, copper, zinc, etc. resulting in greater or lesser tissue affinity and activity. Extra Benefit of IV over Oral Consequently, the IV therapy would produce more constant activity than the highly variable (between meals) oral route even though antibiotic levels were similar."5 When considering cytotoxicity of tetracycline, Dr. Clark learned during his years with Dr. Thomas McP Brown, that tissue cell cultures will survive pulse treatment of tetracyclines but not constant exposure, even at lower doses.5 Low Cytotoxicity In RA, there apparently is no need to keep on top of a virulent cyto-pathogenic agent with high daily doses that could be replaced with less toxic and resistant, intermittent therapy, controlling both the host's reactions and the foreign antigens.5 Anti-microbial Activity Although it remains technically unproven that the anti-microbial property of the tetracyclines may be what is responsible for the sometimes dramatic response to treatment in previously unresponsive patients, it must be noted that there is an abundance of journal research on the topic. Among the candidates mentioned in The Arthritis Foundation's Primer on the Rheumatic Diseases are: "Candidate viruses: T cell lymphotropic virus Type-1 and other retroviruses, Epstein-Barr virus and other herpes viruses, rubella virus and parvoviruses. Candidate bacteria include mycoplasma, mycobacteria, and various enteric organisms."6 The article author, Ronald L. Wilder, M.D., notes that "failure to culture an organism from a joint does not exclude its involvement in RA, because it has become increasingly clear that dead whole bacteria, cell walls, toxins and other components of a micro-organism have the capacity to induce chronic inflammatory joint disease."6 A letter to the editor in the March, 1997 issue of Arthritis & Rheumatism reported the detection by PCR assay, of M fermentans in synovial specimens of various conditions, including rheumatoid arthritis.7,8 The articles in support of a micro-organism as a cause or trigger are too numerous to list here. Our search goes back as far as 1939 and finds the research coming from all over the world from a large number of researchers. Although still considered unproven, we feel there is sufficient evidence in the current literature to at least present a strong suspicion that an organism responsive to tetracycline antibiotics is most probably involved, and would justify treating these diseases as if they are an infection, with antibiotics as the drugs of choice. References: 1 Lorne M Golub DMD, Reduction with Tetracyclines of Excessive Collagen Degradation in Periodontal and Other Diseases, NYS Dental Journal, May 1990, 24-26. 2 Robert Greenwald, et al, Tetracyclines Inhibit Human Synovial Collagenase in vivo and in Vitro, J of Rheum, 1987; 14:28-32. 3 DE Trentham, Novel Therapies, Curr Opin Rhu, 1990; 2, 506-509. 4 T Sasaki, et al, Insulin-deficient Diabetes Impairs Osteoblast and Periodontal Ligament Fibroblast Metabolism, but Does Not Affect Ameloblasts and Odontoblasts: Response to Tetra-cycline(s) Administration, J Biol Buccale, 1990; 18: 215-226. 5 HW Clark, Tetracyclines - Multiple Action Drugs, Mycoplasma Research Inst Newsletter, July 1990, 1. 6 RL Wilder, Rheumatoid Arthritis, Epidemiology, Pathology and Pathogenesis, Prim on Rheum Dis, 10th ed, 1993, 86-89. 7 T Schaeverbeke, T Gilroy, C Bebear, J Dehais, D Taylor-robinson, Mycoplasma fermentans in joints of patients with rheumatoid arhtritis and other joint disorders, Lancet, 1996; 347: 1418. 8 T Scheverbeke, C Bebar, et al, Reactive or Septic Arthritis? Comment on the article by Li et al, Arth & Rheum, 1997; 40:3, 592-592. Mycoplasmas cause acute and chronic arthritis in many animals and should be considered as candidates for causing human joint disease. M. fermentans seems to be associated with some of the inflammatory arthritis diseases, including rheumatoid arhtritis. T Scheverbeke et al, Lancet, 1996 Vol 347, pg. 1418
Links that might be useful:
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Here's a note from the mom that she asked me to post to all of you -
"Due to a special study and 2 new MRIs taken 3 weeks ago, those MRIs show very significant joint damage as her hip joints are growing forward and fusing together keeping her from getting up and down, she can't straighten and therefore on good days, only taking a few steps at a time around the house.
She's in her chair or sitting 98% of the time.
Pediatric arthritis doc says if we don't start treatment right of way, we don't stand a chance of her fully walking again.
Right now, he doesn't feel she will ever straighten.
She also can't bend or straighten her knees. They are stuck.
Her left elbow and wrist won't bend or straighten either. They too are stuck.
And twist at the hips to maneuver her upper body is pretty much almost gone as well.
Ankles move, but not full motion.
Arthritis doc says this is a must in our next step for treatment.
Please thank everyone for their input for me, and they can feel free to keep adding comments over the next several days and/or weeks...I'll keep up with the link.
For now, I have less than 48 hours to come up with a game plan.
Judging from my last appt end of January with LLMD, at which time he agreed the arthritis was much more a severe problem in most of her joints at this time than the lyme/bart.
He also couldn't be sure that the lyme caused the JRA.
She already had the genetic makeup for RA, as it runs in both sides of our families big time.
Although I've always wondered to myself if the lyme didn't cause the JRA to come out sooner in her life than just getting regular RA at an older age.
Why, because she never showed one symptomm or never once complained of an ache or pain of any kind or degree, until after bitten by the tick and the rash showed.
Grant it, it wasn't until 3 months later when she hurt herself in gymnastics and her knew blew up, that the arthritis set in.
I have my own thoughts on this issue, although both LLMD and RA doc both say they can't be sure the lyme caused it.
Her arthritis doc has said over and over again, and depsite other symptoms, still insists that she has been adequately treated for the lyme/bart.
Again, I feel otherwise on that and will continue to pursue lyme/bart help.
So right now I'm thinking I will agree to one round of remicade this Friday, if no side effects within next two weeks, do the second round, continue to wait to see if they are any side effects, ALL the while keeping her off homeopathic remedies and lyme treatment.
Then I'm going to seek a 2nd opinion from another LLMD if I can find one to help me quick enough under these circumstances and one that accepts medicade insurance, to see about switching her treatment and taking another approach other than the cipro and possibly the bactrim.
The arthritis doc said if we want her to get the best possible start we can, to treat the severity of the JRA, we need to try remicade immediately and the antibiotics, cipro in particular, is going to do more damage to the joints and make the remicade less effective in the process (note: we've already tried methotrexate, indocin and enbrel being the most recent).
I too am hesitant on discontinuing the homeopathic remedies, but the LLMD said she really didn't need to be on half of the stuff I had her on, and that an epsom salt soak would be sufficient enough to detox. Not sure I really agree with that, I feel it is necessary.
The other reason we took her off all lyme/bart meds and homeopathic remedies is because between the regular rx meds from arthrits doc, antibiotics and others from new england doc, and ALL the 12 or 15 other things of homeopathic stuff she was on...this child turned into a walking pharmacy!!!
And with all the headaches getting more severe, and the mysterious stomach pains (3 different kinds of pains) getting worse...its too hard to figure out what the heck is causing what and why!
I know taking her off cipro helps with lessening the amount of headaches and lessens the severity of the stomach pains...but is that because CIPRO is too strong for her little wasted body and she can't tolerate it,...is it the CIPRO side effect of headeaches and stomach pains adding to her existing ones...OR is it that CIPRO is killing off so much of the lyme/bart that she is in constant and more severe pain???
I do not believe that CIPRO is main cause of all her headaches, itchiness and stomach problems. To me, she is still showing symptoms of lyme/bart even when off the meds the last 3 or 4 days.
Not severe symptoms yet, but maybe that is because we just took her off them, I don't know.
We've decided to stop all the homeopathic stuff, except for the following vitamins...calcium lactate, vit B, VitD3, catalyn (all standard process).
I will however wait a few weeks and reintroduce lymph-tone 3 or parsley drops, as well as DFS adrenal for drainage and maintenance.
I think that finding a great person to guide anyone in the homeopathic remedy area is crucial.
I'm sure after reading my long explanation, all of you that have responded, whether you agree or disagree with my allowing one and maybe two treatments, can now fully understand the complexity of her situation.
Yes I'm scared of side effects and lymphomas, yes I understand that it isn't really good for a lyme patient to take remicade.
But I do know that my daughter's arthritis situation is getting much worse the longer we wait.
Which needs to prevail and acted upon first?...the lyme/bart...or the very severey arthritis that is also taking my daughter's life away from her from a physical standpoint.
Do I want to treat lyme/bart and risk her being crippled to the point of paralysis and never able to move from the waste down, or do I risk it and attempt to treat the arthritis and eventually as soon as I can do my best to get back to some kind of treatment for the lyme/bart.
I guess what I'm saying here is that I'm grateful to everyone for sharing their knowledge and your opinions are valued and respected.
I just hope I don't offend anyone in my decisions and cause you to think what you've said doesn't matter to me because IT DOES or that I don't understand it because I DO.
I know that as long as she has lyme and other co-infections, other illnesses can't be properly treated and will always be effected so treating the lyme and cos are crucial.
That is why for the last 2 and half years, I've proceeded with the utmost caution every step we had to take with her arthritis treatment and meds to this point.
I've always started at the least so as not to overdo or cause more damage or pain.
Now that I look back...it turns out I wasn't able to spare her any pain or suffering after all during the last 2 years in my approach to treat the lyme/bart first, then the arthritis would minimize or disappear.
Well its not minimizing and its not disappearing, its only worse.
One last thing - if anyone out there knows of a pediatric RA doc that works with any LLMDs or homeopathic practitioners...will you please let me friend, 17hens, know?
Thanks to my friend, 17hens, and to all of you for your unending support and prayers!
My daughter and I keep all of our fellow sufferers in our daily thoughts and prayers.
It really is up to all of us to take care of each other.
HUGS, L"
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Please let L know that I believe she's doing what's right for her daughter. She can't risk amy more joint damage and further deterioration of mobility. I pray that Remicade is a god-send, and is able to stop further progression of her RA.
She should know right away if Remicade is effective. Often, the reason biologicals don't work with lyme, is because it exacerbates lyme symptoms. I'm curious what her experience was with the other biologic, Enbrel.
What came first lyme or arthritis? There's a reason they call it lyme-arthritis. My guess is that the lyme triggered the RA, but who knows for sure. There are many people with autoimmune diseases that are triggered by lyme.
Please know that our hearts and prayers are with you and your daughter. So glad you have a friend like 17 hens for support.
Posts: 964 | From san diego | Registered: Oct 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Wow - so sorry to hear things are so severe. It sounds like the mother is considering all options and making the best choice she can.
It sounds like the cipro may be too much now with the stomach issues? There are other bart drugs and I think herbs might be a better way to go at this point...easier on the immune system and stomach.
I think getting some alternative testing done such as electrodermal screening or muscle testing from someone very experienced would be very helpful to determine the best direction to go.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
Hi 17 hens, I don't want to add to the controversy-Lyme or JRA and antibiotics or no antibiotics.
But I if you want to pass this on to the mom, it may be helpful. I am an infusion nurse and I have several peds patients on Remicade. Usually the kids are pre-medicated with benadryl and tylenol/motrin to help prevent allergic reactions and body aches.
If mom has emla cream (to numb the IV site) she should put in on one hour prior to the IV.Some kids use it, some don't. Most of the patients do fine with the infusion. If she developes a mild reaction, the infusion is stopped and if syptoms subside and vitals are stable, they can restart at a lower rate.
Some of these patients have a form of JRA that affects the eyes, leading to blindness.And it is not prescribed for mild cases of arthritis.
Yes there can be long terms effects, but mom has to weigh the risk vs benefits, which she has done. It is started at 0 weeks, then 2 weeks then sometimes 6 weeks from the 0 week. Usually infused every 4 weeks after that. blood work drawn with the infusion, CBC, CRP, CMP, ESR, and u/a.
Infuses in not less then 2 hours, ususally between 2-3 hours.
Yes Remicade is not for everybody and doesn't work for everybody. The patients I have have done well, very little side effects for now. Of course they are monitored closely.And every drug/herbal therapy can have side effects. I beleive they should also do a TB test prior.
If the loss of mobility can be halted or improved, or blindness averted this can be a lifesaver.Remciade decreases inflamation by inhibiting TNF which is overactive in JRA.
Again my position is not to judge/advise on which therapy, just to let mom know some additional information.
you can pm me for more info. Grace
Posts: 27 | From central nj | Registered: Mar 2011
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