Hi there all. I am not a newbie. My husband has been fighting this for 4 years now and he is not better. We have seen many llmd's. He's been to Sacramento, Missourri, and we now live in CO where his current llmd shut down his practice. He is currently seeing a PA that was a part of that practice and he's working on what to do next. Appt today.
Lately we've been feeling like maybe we are missing something and need to go back to square one with his diagnosis. His family doctor referred him to an infectious disease doc in Denver.
After thousands of dollars in tests, he has not been able to diagnose him. He has many profound problems in his bloodwork, but nothing pans out diagnosis-wise. The amazing thing is, the doctor told him that he could not rule out lyme disease! This coming from an ID doc!!
I am glad that he doesn't have any of the nasty illnesses that the doctor suspected, but that sort of puts us back to square one.
He is not better after hormone therapy, heparin therapy, prolonged use of antibiotics, IV therapy for 7 months, etc. He's added in accupuncture, rolfing, rife, and lord knows what else.
He had a splenectomy a year before we started on the lyme path. No known reason why his spleen was 3 times it's normal size- so out it went.
I hate to even post this because I know it can be so upsetting to see that four years down the road and still he's just as sick, maybe even more sick than when we started all of this. He hasn't been able to work for the past year and it doesn't like he's going to be back anytime soon.
He did have a short period of being well during this. That was back in 2004 after doing heparin therapy, hormone therapy and quinine/clindamycin. It lasted a month before he started to slip backwards. So they switched him to mepron/zith and I can't say it really helped. The only thing I can tell is his quinine/clindamycin was a lower dose than what they use in the studies.
Well, we are going to try to run with that and see if he can go back on that at a higher dose. He's also hoping to retrace his footprints and do hormone therapy and blood-thinning.
His groshong catheter had to be removed due to infection this past summer. He was hospitalized and had been very close to death. He's been very sick ever since. Before he came down with the infection, he really thought he was getting better.
If you made it this far, thank you. I will take all of the advice I can get.
Posted by Keebler (Member # 12673) on :
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Dear Mary,
Ohhh, I hope you find sunny skies soon.
I am no expert and I have just one thought so I hope others will come along.
You said your husband's spleen had to be removed :
YOUR QUOTE: He had a splenectomy a year before we started on the lyme path. No known reason why his spleen was 3 times it's normal size- so out it went. END QUOTE
I assume with all the tests, that your husband was tested for babesia. Babesia can really affect the spleen. In fact, in cases of those with babesia who have no spleen treatment, can be life-saving.
So, even if he was treated for babesia as a co-infection, I wonder if you might as the PA about reexamining that. Co-infections can be as rough as lyme.
Sorry I do not have more right now. I do hope you both have an easier time of it. Take very good care of yourselves and let us know what happens.
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[ 07. November 2007, 04:42 PM: Message edited by: Keebler ]
Posted by TerryK (Member # 8552) on :
I'm so sorry to hear that your husband is still sick or even sicker after years of treatment. Please don't hesitate to share this experience. All experiences are needed and hopefully someone here can give you some ideas that may help.
My first thought was babs too and I see that he has been on mepron. Babs treatment can take quite awhile and may need to be treated more than once.
Has he been evaluated for the other co-infections? Testing is not very reliable, he may need to be treated empirically. Is his LLMD open to this?
There are some viral infections that can be very problematic. Has he been tested and/or treated for a viral component?
How about parasites?
Yeast?
Have you removed all sources of mold in your environment?
Hopefully others will come along with more ideas for you. I really hope you get some answers.
Terry
Posted by mfrfr (Member # 4738) on :
Thanks you all so much.
The thing is, he has been tested for babesia multiple times and it has been negative. My understanding is that it is very difficult to detect it on these tests. Yes, that is what we are thinking too though.
He has brought it up to his doctors and they have told him before that the high doses of zithromax that he was on via iv worked against babesia. I've never read that anywhere, but they are supposed to be the experts, right?
They have him on an antimalarial right now, but what I have read says that it is commonly used to prevent malaria in travelers (a rare side effect being psychosis). I have told him to tell the pa that he is not comfortable with that medication and ask to put him on the defined treatment for babesia at the defined dose.
I guess I don't understand why he was put on a weaker dose previously and why they didn't put him on this before they started the iv treatment. It simply wasn't a part of their protocol.
I can't attend all of his appointments because we have two kids and I rarely have the chance to go, with or without the kids.
Posted by mfrfr (Member # 4738) on :
He's tested high for epstien barr virus and a number of herpes viruses. He has been treated with valgancyclovor.
Posted by TheCrimeOfLyme (Member # 4019) on :
I'm not a doc, but my best guess would be that your husband lost his spleen due to babesia, and now without the spleen- fighting it is going to be that much harder.
* Thats ONLY a guess* usually with resistant symptoms, babesia is always to blame ( or another coinfection that wasnt addressed).
IV Zith alone wont work against babesia.
has he tried artemisinin?
Posted by TerryK (Member # 8552) on :
I'm not a doctor but my recollection is that zith is given with mepron to keep the babs from becoming resistant to the mepron but there could be other reasons too.
I highly recommend Dr. S.'s book "The Diagnosis and Treatment of Babesia", there is one for physicians. It is very good.
If your husband is on mepron, make sure he is not taking Co-Q 10 or Doxy since they both reduce effectiveness.
Get the book, it is invaluable. If you get the book, go to the side panel here and click on the amazon.com icon. A portion of the sale price will go to help support lymenet.
The book outlines some of the best treatments for babs by top LLMD's.
Terry
Posted by Lymetoo (Member # 743) on :
I cleared my babesia with clindamycin/quinine but it took months and months and months of treatment. I finished it off with artemisinin/zithromax.
After that, I've been doing great. I couldn't believe those symptoms were really gone.
Several here have discussed Fry labs in AZ for coinfection testing. But the main thing is to TREAT for it.
Posted by Michelle M (Member # 7200) on :
Oh my goodness, I'm so sorry to read of your husband's health struggles.
There are SO many types of babesia. And so few that are tested for -- 2, to be precise, out of at least 16.
I would contact Fry Labs. Find them on our Newbie Links, pasted in the stickie links above.
Have your doc request a blood smear kit.
Get a blood smear done.
In my humble opinion, ASAP.
Those without a spleen must be SO cautious, as you know well.
This lab has been able to visualize babesial organisms where other labs -- even great labs like IGeneX, fail. That is because they painstakingly LOOK at the actual blood smear. Ask me in a PM and I'll send you photos of samples, or do a search here. They may even take insurance now. They are also quite good at detecting bartonella and other organisms.
I would hope you could do this on the order of soon.
Glad you found us, and do keep us posted. Wishing you the best!!
Michelle
Posted by yanivnaced (Member # 13212) on :
Sorry about your husband's health. Hopefully folks on this board can give suggestions and you'll find the key to recovery.
Do a search on member "HaplyCarlessdave", his member ID is 413 - he's a nice guy.
I believe he is without spleen and he beat Babesia.
I think he used herbs in addition to antibiotics.
Posted by mfrfr (Member # 4738) on :
Thank you everyone.
My husband's appointment is today. He is going to ask for a real babesia treatment, not this supposed treatment that they put him on. If she will not do that then he will just have to find another doctor. I will let you all know how it goes.
Someone asked, about atemesenin- yes he has taken that, but I just went through our stockpile of supplements (you wouldn't believe what we have) and we still have most of a bottle left. Does it expire? It's leftover from 2004. Should I make him start taking it now? It has an imprint on it, but most of it is rubbed off and it's hard to read.
He is really good at buying supplements and then not taking them.
I'll update later today.
Thank you again.
Posted by CaliforniaLyme (Member # 7136) on :
I agree with Crime!!! And MM!! And everyone!!!
Babesiosis can make treating Lyme difficult. I had a hard case of Babs and was on Meporn/Zith two years, Artemisia the last year of that. I was also on abx for 9 months and didn't have beneficial effects until the 7th!!!!!!!
He is lucky to have you- Best wishes, Sarah 100% symptom free
Posted by tailz (Member # 10014) on :
This is my problem, and like Lyme, no doctors are believing it - it's even worse than Lyme that way. I think electromagnetic fields are causing chronic infection, too, in that these frequencies cause parasites to reproduce while at the same time suppressing our immune systems.
You might want to check your area for cell phone towers here:
Hope that helps you get to the bottom of his symptoms.
Posted by bettyg (Member # 6147) on :
mary, does your husband have SSDI benefits?
if not, please read in my newbie package for this info of 25 pages combining EVERYONE's expertise in there.
if you don't have this, PM me, and i'll send it to you this way.
best wishes; this is the area i know things about; what you addressed on board, i can't contribute anything. Posted by Keebler (Member # 12673) on :
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TerryK asked: Has he considered binding and removing biotoxins? He may be one of the 25% of the population that cannot get rid of biotoxins.
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I forgot if he is gluten-free. If not, I sure would hate to take away his wheaties, but there are lots of nice gluten-free options now. That could make a big difference, too.
While I'd put my money on chronic babesia and get that special test done at that special lab someone mentioned above . . .
You might ask them to check his porphyrin levels &/or use drugs that are easy on the Cytochrome P-450 liver (detox) pathway IF you can.
Herbal support can be with schizandra berry, which in tests helps improve C- P450 enzymes (See Tillotson, One Earth Herbal Sourcebook). But, just as with milk thistle that also helps, check on timing so as not to flush out meds too fast.
Toxin-binders are also helpful, TerryK's post above as info.
The C-P 450 pathway has other pathways within it but I am not educated in the finer points.
Everyone has porphyrins. However, in excess they can starve the red blood cells and do some major damage.
Was he ever sensitive to lights or to the sun (both his vision and his skin)?
Do his ancestors come from Northern Europe, Ireland or Africa?
If before your husband got the tick borne infections - if he was every very chemically sensitive, sensitive to alcohol or had unusual effects from even small amounts of medicines that could point to excess porphyrins.
Have any of his blood relatives had any of these symptoms?
This happens when the liver does not make enough of the very specific enzymes to help detox endotoxins from the body.
The tests are done on blood, urine and stool samples and must be done in a specific manner (i.e. covering the blood vials with foil as they are drawn to block out light).
There are many kinds (at least 11) of porphyria.
Treatment can involve beta carotene, IV solution of glucose, or oral sugar (not fruit . . .it has to be sugar if it's an emergency - and that's not great if candida is present but it can save a life if porphyria is present)
If this sounds like a possibility, you can get more information and talk to someone at either of these two places.
THE CANADIAN PORPHYRIA FOUNDATION I will come back with the web links a little later.
THE AMERICAN PORPHYRIA ASSOCIATION
Not all doctors know about porphyria and the labs may need to be shipped to a special lab.
Now, if this is the case, knowing which meds the liver can tolerate can make a big difference. And, by the way, artemesinin does use the cytochrome P-450 pathway. However, I deal with porphryia and I do fine taking it. I also take beta carotene and if I feel in trouble, some very dark chocolate that has low sugar but enough to pull me up. I also take anti-yeast measures with probiotics and allicin.
this all sounds very complex, and I hope this is not what is happening but it should be considered and ruled out. However, these tests can not tell for sure. If someone has chronic porphryia (which can be secondary to lyme and CFS) the elevations may not be huge. But if a porphyria attack were to hit then the levels might rise considerably. You can't always test then. So many people go undiagnosed until an attack.
Usually an attack would involve lower GI symptoms with alternating diahhrea and constipation or anxiety and disorientation (from the toxin build-up).
Again, I am so sorry to toss out something so complex. I hope I was just over-thinking here.
Best of luck.
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[ 07. November 2007, 04:32 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
MALARIA PROPHYLAXIS FOR PATIENTS WITH PORPHYRIA TRAVELLING IN SOUTHERN AFRICA
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Posted by Keebler (Member # 12673) on :
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I hope long again the doctors checked for Chlamydia Pneumoniae, but I post this here for info about SECONDARY PORPHYRIA and the following section on CHLAMYDIAL ENDOTOXINS.
(Informatin about ATP can be valuable for those of us who may need more energy, too. ATP/mitochrondia stuff is a huge topic, though, and this just touches the surface.)
Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia - An Opinion, by Patient Advocate James Kepner
04-23-2007
EXCERPT:
Features of Cpn and Cpn Infection
MULTI-ORGAN INFECTOIN. Cpn crosses from the respiratory system and can infect multiple organ systems including the nervous system, liver, heart, bone marrow, immune cells, skin, and so on.
INTRACELLULAR ENERGY PARASITE. Cpn reproduces by entering the host cell of your body tissue and stealing the ATP energy molecules that your cells function with. [ATP, or Adenosine triphosphate, transports chemical energy within the body's cells.]
SECONDARY PORPHYRIA. Depletion of host cell ATP by Chlamydia pneumoniae means that your cells don't have enough energy to complete their normal biochemical reactions.
One of these, the production of heme [the deep red iron containing component of hemoglobin], requires lots of ATP to come to completion.
ATP depletion results in incomplete heme production and a build up of the incomplete byproducts called porphyrins.
Porphyrins are neurotoxic and have numerous deleterious effects on the nervous system including anxiety, depression, bowel and digestive disturbance, and interference with sleep, rapid pulse, and even psychosis.
CHLAMYDIAL ENDOTOXINS. Chlamydia pneumoniae contains a number of endotoxins in its structure, such as LPSi and HSPi-60. These endotoxins cause widespread inflammation (cytokine cascades) and a host of other metabolic disturbances.
These are released chronically in small amounts in Chlamydia pneumoniae infection and in large amounts when Cpn cells are killed.
CYTOKINE CASCADES. Cytokine responses (inflammatory immune reactions) are rampant in Chlamydia pneumoniae infection from a number of sources:
to Cpn endotoxins; to the bacterial envelopes left behind by dead Chlamydia pneumoniae bacteria in tissue, which cause a variety of inflammatory reactions; and even the death of neighboring non-infected healthy cells.12
ANTIBODIES TO VITAMIN B-12. B-12 is an important co-factor in a number of energy and detoxification processes in the body. One of the unique findings of Dr. Stratton's group was that antibodies to vitamin B-12 develop in many Chlamydia pneumoniae infected patients.
This means that normal blood levels of this vitamin are insufficient, as it is bound to antibodies and useless to body functions affecting energy production and detoxification (methylization).
With these in mind, let's look at how these, and other factors about Cpn, might explain some of the otherwise mysterious symptoms of Chronic Fatigue Syndrome and Fibromyalgia.
FULL ARTICLE AT LINK ABOVE.
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Posted by sixgoofykids (Member # 11141) on :
I know you've been to several LLMD's, but I really think your hubby needs one ... one who will treat coinfections.
Mine is in NY and is very aggressive with treatment. He's been treating Lyme for 20 years. If you want his contact information let me know.
I wouldn't bother with doctors who do not know much about Lyme. I would guess your husband is having so much trouble because of his lack of spleen, but that's just my guess.
Posted by mfrfr (Member # 4738) on :
Well, sorry you guys, my husband's appt. was cancelled. Apparently something is going around and practically the whole practice was sent home today. He will have the appt. rescheduled next week.
A few things: He has been tested for Chlamydia pneumonia- always negative. He is Italian. None of the extended family has problems like his. He recalls pulling off a tick in Maryland when he was 16. He got very sick that year- pulled out of school and everything- he was diagnosed as sick with mono. He says he has never been the same after that.
He's 33 now. **** didn't hit the fan until he was closer to 27 although his health had been deteriorating prior to that- fevers, fatigue, deadlegs.
I'm really thinking we might go back to Dr. C. The only reason we quit seeing him was because we found a local doctor who would treat him where we lived and it was easier and much cheaper. Then we moved to CO. Dr. C's office seemed really overburdened. I'm wondering if they still have his records and we can pick up where we left off.
Sixgoofykids- I would love the recommendation. We've got to do something different than what we are doing now.
Posted by sixgoofykids (Member # 11141) on :
If Dr. C was working out, he's great, too, I'd go back. He's gotten many people healthy.
I'll PM you my LLMD's contact info.
Posted by seibertneurolyme (Member # 6416) on :
My hubby is in somewhat the same situation as yours. He also did well on Quinine/Clindamycin combo-- Dr C is his LLMD.
The anti-malaria drug with psych side-effects may be Larium. It is used for Babesia -- one pill every 5 days I think. Hubby was prescribed this by the Dr B in NY (retired) -- hubby could not tolerate that drug.
I would suggest a bloodslide test from Fry Lab in Arizona. For $285 it will show Babesia and Bartonella. Hubby tested positive from this lab and all other previous Babs and Bart tests were negative except for one test from Bowen lab.
One other thing to consider -- In my opinion, Clindamycin is bacterisotatic for Bartonella, but not bactericidal -- keeps it from multiplying, but can't kill it in other words.
Good luck.
Bea Seibert
P.S. You might want to start another post and list some of the bloodwork abnormalities. There are lots of very smart people here who might have some ideas on things that have not been thought of in the differential.
Posted by Lymetoo (Member # 743) on :
Dr C's load of patients is more reasonable now than it was a yr or two ago since he's no longer taking Medicare. I'm sure he has your records.
I thought someone posted here about not using old artemisinin. Maybe you can do a search and find that info. I'd be cautious. It's not that expensive.
Uh-Oh. I have an appointment with the same PA on Monday. I will be calling their office tomorrow anyway about getting some bloodwork faxed and find out if everyone is still sick there.
And as someone else pointed out, Lariam is probably the anti-malarial he is on. Dr. M. put me on that. I take it once per week and will be at the six month quitting point next month.
I also think that at that practice, they were conservative with the antibiotic dosages as my abx's are all fairly low dose. I believe the thinking is to not have a person herx too strongly.
Sorry to hear that your husband has to deal with this and especially without a spleen.
Posted by Keebler (Member # 12673) on :
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Mary,
Your husband is very lucky to have someone so willing to search for answers by his side. And, I'm very impressed with the level of experience on this board. I've learned alot just today.
Oh, even if porphyria is not genetically acquired, it can still be a secondary player in chronic infections when the liver is affected. So make sure the toxins get captured and moved on out just in case. I find rhubarb, as a supplement, helps move stuff through the gallbladder and G.I. tract pretty calmly.
Fasting can be very hard if the liver is trying to make more enzymes. So even if he does not feel like eating, a smoothie or protein shake can help. Protein also helps the liver make the detox juices, so to speak.
I, too, had many ticks and was dx with "mono" in college (many moons ago). 'twas never the same, either, and also took years to really hit the fan, as you said. "Mono" seems to have been the common diagnosis before "CFS/FM" for many who turned out to have tick borne infections.
But I still dream of being well. I am glad you can share that dream, too, with your husband.
Take care, now. And please let us know how this all turns out, okay?
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