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I have been on AP for active Lyme disease for 6 weeks but have had a setback.
Couldn't tolerate Minocin even 100mg/day never mind twice a day. Then Cefuroxime 250mg twice daily, which seemed to suit better.
Once that was ramped up to 500mg twice/day- I could only stand it for 7 days before having to drop back to 750mg but next was Clarithroycin also and after 24 hours of that- my brain herxed. Nausea of the brain is the only way I can describe it-so on Dr D's advice, I stopped the Clarith and dropped back to 500 Cef once/day and the herxing- (or something) continued. It involved anxiety, depression, change to brain and uneasiness along with some little rashes and marks but the brain probs made me feel the big yellow taxi would have to take me away. Irritation and inability to cope were also there big time.
Dr D at Breakspear has told me to come off Cef and build up my strength- I have lost loads of weight too- (I'm only little anyway and was already too light and lost a lot of muscle - poss due to the RA)
Dr D is semi retired so understandably is not very available but I have felt very little all round support and said so. The only thing I have had apart from 20-25 minute consultations, is food testing which also makes building myself up really difficult since wheat, eggs, yeasts are all intolerances now.
Now it's 5 days since I stopped taking the pills and although I take supplements and am seeing a nutritionist that I know, I am still in a bad way mentally and emotionally. It really feels like a nightmare. The only good thing is that my joints are working much better so that will probably satisfy Dr D since he is a rheumatologist.
I went privately to see an endocrinologist today. He has pounced on my ESR at 48 and said this is unacceptable at my age (56) and has been going on too long. The strange thing is that my ESR was 67 before AP- 2 months ago. Also my CRP has dropped from 30 into normal range of 8.
He of course suggested steroids but said he knew I wouldn't want them. I have talked to him about them suppressing my immune system and his answer is that a short course may help to reduce inflammation and get my body back to health along with Vit D and hormone help and then my body can fight bugs better. He has run some blood tests including Vit D and Calcium levels.
He also considers that Epstein Barr virus could have resurfaced.
I have also had a blood test to check for an auto immune disease of the ear and eye since I am having constant deafness and tinnitus and strange weak vision on the same side. Apparently this can also be due to too much inflammation for too long in RA.
He says he does know Lyme and has seen it in the chronic form. He is a very pleasant man and has a good reputation for dealing with 'challenges.'
I know the dichotomy between standard practice and specialist Lyme but it is so scary to be in this place right now when you feel you haven't got a lot of strength.
I feel I am between the devil and a very very hard place and I don't know how long I can keep feeling as bad as this.
I can't see the heroics in being able to 'take' a Herx like this. If it was pain, then I could understand it but messing with your brain is something else.
How long can a reaction like this go on?
Has anyone experienced this or am I just a failure?
katemurrell@South Scarle. RA 15 yrs (disease only very active last 3 years)Started Minocin 100mg alt days 3x wk in Dec 2009.
March 2010- Tested Positive Lyme. Cefuroxime, 250mg 2/day
I sure sympathise with you.I think that most of us with Lyme have a really tough time the first few months.I had SD pretty badly but it's pain is nothing compared to the Lyme herx.Sometimes my head feels like mush is substituted for brains.Terribly frustrating!The pain in my jaws feels like a toothache in every one and left eye feels like someone is turning a carving knife in the socket,pain in the neck is not much better.
Every time this gets to be too much I just stop all meds for a week until things settle down a bit and then move on to the next round.Just this week has the herx become somewhat tolorable.At times I just want to chuck it all and go buy my coffin but I am just tooooo pig headed.
Systemic SD In total remission BUT just discovered Lyme.Taking 100mg minocin 3 times a week
zithromax 250mg on Friday
clindamycin 300mg on Thursday
fluconazole 100mg every day
metronidazole250mg 5 days on and 5 days off
Herx from hell especially the
I had a brain herx that lasted for a day, and it scared me to death. :sick:
I'm surprised that your symptoms of depression and uneasiness weren't resolved when you backed off the Clarithromycin. For me, backing off the medication (Mepron) for a day or two resolved the reaction. I'm still careful to under-dose the medication, to minimize the possibility of it happening again.
What are you doing for detox? Are you using the hydrogen peroxide/epsom salts baths, lemon olive oil drink or fir sauna? I have found that Alpha Lipoic Acid is a great antioxidant, apple pectin is a good binder for toxic debris, fibrolytic enzymes are a must for thinning the blood and biofilm break-up, and some kind of liver support like milk thistle. Are you eating enough to push these toxic loads out of your system, and are you taking something to keep you regular like oxy powder or colon cleanse? My latest addition is a homeopathic drainage kit by Pekana to assist the body in detoxifying the liver, lymph and kidneys. There are some lyme experts that believe a herx is the lack of detoxifying , and a buildup of toxins recirculating in the body.
Last thought is are you adding, or ramping-up one medication at a time? Whenever I add more than one thing, or move too quickly in increasing dosage, it backfires, and I am unable to know the cause of the reaction.
Some people just have other issues that must be addressed before lyme teratment. It could be parasites, yeast issues, hormone imbalances, anemia, or gut dysbiosis.
There are a number of people here who have had to move slowly with lyme treatment, and hopefully will offer their perspective. Hope you can get through this, and on to feeling better....
Reactive Arthritis 4/09, CFS, mycoplasma hominis and pne, toxoplasmosis?, lyme/babesia? minocycline 100mg, zithromax 300mg, tindamax 1000 mg three weeks/mo., mepron 4 tsp., Ceftin 1000 mg., Lariam every four days, VSL#3, oxy-powder, bromelain, lumbrokinase, ALA, olive leaf, apple pectin,...and IV clindamycin.
[user=1615]kate murrell[/user] wrote:
During my first bout with Lyme, I thought I was going crazy and had the early beginnings of Alzheimer's. To treat Klebsiella pneumoniae, I was put on Cipro and this threw me into remission.
My husband, who suffered, so to speak, with me, agrees that the pain is much better than the brain thing.
I hope this passes very quickly for you--hang in there!!
Lyme/RA; AP 4/2008 off and on to 3/2010; recognizing that the past use of quinolones (herbal and pharmaceutical) may be the cause of my current problems, all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now also treating for the homozygous MTHFR 1298 mutation. Increasing folate and the B vitamins has been very helpful. 12/2013 started Homocysteine Factors by Pure Encapsulations (no fillers). Off of all pain meds (was on them for years--doctor is amazed--me too). CURRENT treatment 2/9/2015: For MTHFR: MethylAssist, B-ComplexPlus; For quinolone damage: Ascorbyl Palmitate, Ginkgo 50, Magnesium Oil; Add'l Support: Iodine and Boron alternate days. Bamboo Leaf Tea for detox.
The brain Herx. is the hardest for me as well.
In my case the worst of them will last about a hours time. I have to tell myself this is a brain herx.
They are beyond horrid. But what doesn't kill me will make me stronger.
The meds. I am on right now are aggressive.
My Lyme suggested a product from Nutramedix it's called Pinella.
Here is a link about it.
Sorry to hear your struggling, i also have had bad herxes, seems to be flare up in my ankle or shoulder, if not there its my brain and scares me i seem to get dizzy, hot flush and feel like fainting, the blurry visison is also scary, so i just stop the meds for a day or two, It is hard not knowing, i posted on her to and luckily got replies from people who know a lot more than me, with me i definately think food has lots to do with it, Dr D is very layed back and i know what you mean about him. Hard when you cant get to talk with him, my last herx i had to take codiene phophate for the pain, and my gp gave me Depo medrone steroid injection which now ive been told made me worse as it suppress everything, and all the bad toxins i want t o come out, for me i have to get through the pain then start again, im told it will get better, sorry cant help more, try to get through it
Pseudogout,Gout, Chronic Lyme Disease, co-infection Bartonella, Lots of Food sensitivities, leaky gut, Lead Toxicity,
Low dose immunotherapy injection 15ml every day, 4 a day Artesunate, Avoid Sugar , Chelation treatment.
Add me to the list of people that knows what a brain herx feels like.......scares the living hell out of you. As the others have already said, backing off of the abx, detoxing, and taking a little break has saved my bacon on more than one occasion.
SD, RA, MCTD, Hashimoto's, Osteoporosis, Sjogren's, Uveitis, Lyme dx 9/08, AP 8/05-3/08, MP 3/08-8/08, AP/Lyme protocol 9/08, 9/09-REMISSION.
~ whatever it takes ~ http://www.roadback.org/index.cfm/fuseaction/community.display/display_id/502.html
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