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First off, I want to apologize if I am posting too much. These past few weeks have been really tough and your support means so much!
After being off mino and abx for over a month a few weeks ago I had a severe bout of dizziness that landed me in the ER. Since that day I felt very off and all my old symptoms ( throat infections , muscle pains, etc.) came back. Around the same time updated blood work came back from my AP doc and my ASO was back up to 400 (from about 380) and Batronella was still positive. As a result, my doctor recommended I start 500mg of Zith daily and Penicllin. Over a week ago I decided to start the zith (held off on penicillin). About 7 days after starting the zith ( last Wednesday) I had a complete breakdown. Please note this was also after a weekend of very heavy drinking at a bachelroette party ( I know I know so stupid) I had a complete out-of-body experience, got so weak, laid on the floor of a restaurant and the only thing that brings me out of this episode is xanax. I haven’t been to work in over a week and I can barely make it through a day without having multiple panic attacks, headaches, etc. I feel completely out of touch with reality when these episodes happen like I’m floating around. I am SO scared. I have since stopped the zith. My question is, could this be a herx? Could the zith have cause some sort of permanent psych issue? I am concerned because this is sort of how I felt when I first got sick in the summer and I’m not sure if this means I need more abx ( like penicillin to treat the ASO) . The weird dizzy feelings started BEFORE the zith so I’m having trouble sorting out whats causing what. I don’t know what to do next. My AP doc thinks I am herxing bad and need to detox and stabilize before trying penicillin but I am very concerned this strep or lyme is starting neurological symptoms. I have never been more scared in my life. I feel so so sick. I am taking alka seltzer gold to detox , swore off alcohol, am seeing a therapist for depression…I am scared I lost my mind for good:/ Please help!
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Hi,
Some of your symptoms sound like they could be caused by secondary porphyria.
For more info, see: Secondary Porphyria: what you should know before starting a CAP
Although that page is oriented toward people with a Cpn infection, it is likely that there are other intracellular infections that can also cause secondary porphyria. You may also have a Cpn infection and not know it.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinDarling, if you don’t mind me asking, does your therapist have you on an anti-depressant medication?
Yes. I’ve been on 50mg of zoloft of mild depression and anxiety after a death in the family 6 years ago. I’ve never had depression to this level as I have this past week. I was going to wean of zoloft last year but then got slammed with this mystery illness. It’s a real chicken or the egg dilemma in the most recent episode. I’d like to think this is a herx but the dizzy spell started before the abx so I can’t be sure. The depression seemed to definitely set in after I started the zith but again I can’t keep it all straight. If I hold off on more abx and the root cause of my fuzziness/ mood issues is an infection then I am scared I’ll get worse. Alternative is starting back up but it may make things worse. My AP doctor thinks its a herx but doesnt know what to make of the dizziness. She suggested stabilizing and then trying something more mild like penicillin. I’m on the verge of going to a psychiatrists I just know they’ll try to put me on a lot more medication that will cause a number of side effects. I was doing so well just last month running a half marathon and all! I think I pushed too hard and my body is way out of whack. Not sure what to do next…
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Phil the link you sent is interesting! I’ll ask my doctor about it.
The odd thing is the out of body type spells and fogginess get bad the same time everyday ( around 2pm). It’s hard for me not to think this has something to do with something in or missing from my system!
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Just heard back from my doc. She said my mycoplasma is back up but my step is down. She wants me to stick with the zith or try mino again to get the mycoplasma under control . I explained to her that I really want to get the ASO down as well but she wants to table this. I thought Henry Schammel also says to address this asap? I’m beginning to think I need another doctor. Problem is I’d like an llmd AND someone who deals with other illnesses through AP. Any suggestions for NYC?
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
I’m beginning to think I need another doctor. Problem is I’d like an llmd AND someone who deals with other illnesses through AP.
I don’t think you need an LLMD right now. From what I’ve gathered, most seem to use rather aggressive antibiotic protocols that can be very difficult to tolerate. And it seems that they don’t have an awareness of the suffering that they inflict on their patients by using such aggressive protocols, because if they did they would start with a gentler and more cautious approach. Instead, they use the “big guns” starting on day 1.
By the way, it’s likely that I have Lyme Disease, but I’ve never been to an LLMD. And I have no intention of going to one any time soon. I may go see an LLMD at some point in the future, though, after my bacterial load has been reduced to a low level and I am feeling very close to normal. By that point, I should be able to tolerate the aggressive antibiotic protocols that LLMDs use without too much trouble.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinYes. I’ve been on 50mg of zoloft of mild depression and anxiety after a death in the family 6 years ago. I’ve never had depression to this level as I have this past week. I was going to wean of zoloft last year but then got slammed with this mystery illness. It’s a real chicken or the egg dilemma in the most recent episode. I’d like to think this is a herx but the dizzy spell started before the abx so I can’t be sure. The depression seemed to definitely set in after I started the zith but again I can’t keep it all straight. If I hold off on more abx and the root cause of my fuzziness/ mood issues is an infection then I am scared I’ll get worse. Alternative is starting back up but it may make things worse. My AP doctor thinks its a herx but doesnt know what to make of the dizziness. She suggested stabilizing and then trying something more mild like penicillin. I’m on the verge of going to a psychiatrists I just know they’ll try to put me on a lot more medication that will cause a number of side effects. I was doing so well just last month running a half marathon and all! I think I pushed too hard and my body is way out of whack. Not sure what to do next…
Darling, so sorry to hear about the loss of your family member and depression. I asked about an antidepressant, because of what you said above in your first post and what you said below in a subsequent post, where you also mention Xanax (in addition to Zoloft?):
Over a week ago I decided to start the zith (held off on penicillin). About 7 days after starting the zith ( last Wednesday) I had a complete breakdown. Please note this was also after a weekend of very heavy drinking at a bachelroette party ( I know I know so stupid) I had a complete out-of-body experience, got so weak, laid on the floor of a restaurant and the only thing that brings me out of this episode is Xanax. I haven’t been to work in over a week and I can barely make it through a day without having multiple panic attacks, headaches, etc. I feel completely out of touch with reality when these episodes happen like I’m floating around.
Although the interaction of Xanax and Zoloft with alcohol is considered moderate, it’s likely relative to dose/consumption and worth checking out the effects of such a combination, which are mostly neurologic.
http://www.drugs.com/interactions-check.php?drug_list=1034-14582,133-54,2057-1348
A person I know would binge drink while using such medications for depression and she would experience the same symptoms you’re describing and actually passed out several times, before the connection was made. Of course, I don’t know if this is what happened in your case, but as the episode occurred shortly after an evening of heavy drinking, it’s worth asking the doc about. Dealing with these bugs that can affect the neurological system is pretty challenging and many Lyme patients find they are completely unable to tolerate alcohol of any kind, as well. I haven’t even had so much as a sip of alcohol since I got Lyme, as I just can’t tolerate it and the effects of the alcohol (depressant) affect me multifold. So, is it possible that the combo of your pathogen load, alcohol and antidepressants just aren’t a good mix? Sounds like you’ve pretty much figured that out for yourself already, though.
As the liver is the major organ for detox, it might be worth focusing on detox for a while and discussing the anti-depressant medication with your prescriber? I.e. whether it’s time to taper off it or to switch to a new one?
I think Phil raises some legit points regarding tolerability of antibiotics and bug-killing – killing bugs and not the patient. However, it can be a very fine line with Lyme and the treatment of associated coinfections as resistance issues can occur, complicating and prolonging treatment, too.
There is a pretty experienced integrative LLMD in NYC who was also a Clinical Prof of Psychiatry at Yale for a time, specializing in Lyme encephalopathy and neurological symptoms. In other words, he might make a better local, one-stop type of doc for you, and someone who is well-versed in the treatment of neuro-Lyme/coinfections. Would you like me to send you his contact info? He’s probably on the list I sent you originally (Dr.B.R.). Let me know if you need his contact info again.
Thanks Maz. I made an appointment with Dr. R for June which is the earliest they could get me in. It’s going to cost an arm and a leg to seek treatment with him so I really hope he is the best. I also wonder if I being impulsive and did not give Dr. M in CT long enough (just started seeing her in December)…but something tells me I need someone who is more experienced. Thanks for your help.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Thanks Maz. I made an appointment with Dr. R for June which is the earliest they could get me in. It’s going to cost an arm and a leg to seek treatment with him so I really hope he is the best. I also wonder if I being impulsive and did not give Dr. M in CT long enough (just started seeing her in December)…but something tells me I need someone who is more experienced. Thanks for your help.
If your gut is telling you to move on, then you probably should. Not every doc is a good fit for every patient, for sure, and as things evolve, sometimes we need to seek out specialty expertise. No one patient is the same as another. The only thing I’d say is that as you’ve already seen two different docs and this is a costly old business, be sure to do your research on this new doc to satisfy yourself that he can commit to the services you require. For a bit of a snapshot, he’s got a cameo in the Under Our Skin movie, which is available on Hulu, and his website is also informative with some links to some presentations he gave at conferences. Would also recommend connecting with a local Lyme advocacy group to ask for their take on this doc. I know of one lady who went to see him with RA from RI and she had a great experience with him (clinically diagnosed her coinfections that were positively confirmed by labs), but that is just one experience I can share. We don’t get a lot of patient feedback on the LLMDs on the RBF list.
hi darling,,,,go ask your doc for a PCR test, also chlamydophila serology blood test. you might be surprised and if its positive and i have no doubt it will be then maybe i can point you in the right direction…up to you.
HI Robert. PCR test for what? Lyme?
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Darling,
Are you still taking Mino or just Penicilin?
Linda LRA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHi Linda I’m just on penicillin only. I have not been able to add in the mino due to nausea on the penicillin. My body aches and energy levels have improved dramatically these past two days! As I’ve always suspected I think my main issue is strep. I am hoping my doc will consider giving me intramuscular penicillin soon.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
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