My wife was dxed with Lyme back in Feb after having a severe "headache" along with numbness and severe eye pain on the left side of her face and head by Dr.C in MO. We had previously been to 10 doctors here in MS without a diagnosis and there was an MRI done that showed nothing out of the ordinary.

She was on doxy for three months and there was a modicum of improvement, then she went on flagyl for a few weeks and there was a slight improvement; the first day she didn't wake up with a "headache" was Memorial Day (taking flagyl for around 10 days), but has since worsened.

Our middle son, Will, drowned on Memorial Day; he was twenty-six. We are very distraught but know he is with The Lord now.

She can only stay on abx for a few days at a time before severe herxes send her almost back where she began.

She recently combined Biaxin with a sliver of flagyl and is now experiencing a severe herx (and stopped abx). We have another appointment set up for July 5.

I think I may also have Lyme because I don't think clearly anymore and my right elbow has been hurting badly (only when I move it) for several months and back several years ago I was disabled by a strange skin condition with muscle and bone involvement that was never satisfactorily diagnosed.

It was called a South American fungus because I was a produce man and was slightly injured (splinters from a wooden crate) and this is the area where the lesions began.

We are financially very poor (my disability check is all we get), but we will be able to rent a car and keep the appointment on July 5. My wife doesn't qualify for a disability check or Medicaid or Medicare.

The only thing that helps my wife get settled down so she can "sleep" is for me to massage her scalp and neck for hours (which I don't mind doing at all); she takes Anacin and Advil Liquigels at different times trying to get a little relief.

She has lost a lot of weight; she is five feet tall and weighs ~100lbs. She used to weigh about 130. She can't eat when her head hurts very badly and I am very worried.

Thanks for any advice.

I believ your wife is on the right track....as is evidenced by her herxheimers.

Patience is a virtue here...also, you might mention Benicar and the Marshall Protocol to him.

Stay on course...(I know how hard that can be at times...but, in this case you are hitting the nail on the head and you don't want to give it a chance to come back at you...take your time)

Trout

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Now is the time in your life to find the "tiger" within.

I can barely type through my tears right now; things seem so bad sometimes.

I am so sorry to hear of your son's drowning.

Isn't it strange that I thought only about 2-3 days ago "whatever happened to Leroi and his wife". Not that I imagined such tragedy, I was wondering how your wife was.

You're both in my thoughts.

The grief that my parents carry is tremendous.

As a family we talk as much as we can about Craig..it keeps him fresh.

I coined the following phrase;

"I look at death as a water tower.

The grief that pours out is the water within, and each time we grieve there are less tears left, and when those tears are gone all we see is the old water tower itself...and, that is the memories that everyone sees each time we speak of them...and with time the pain goes away and those tears are replaced by smiles.

So, help me grieve, bring on the water (tears), and let us share the view of the tower that remains."

My brother and I were BEST friends...he my junior by 3 years....everyone showed up to comfort ME...while on the contrary...I was there for them. Why?

I shared every moment and thought with him for years. My memories were strong, and the stories tremendous...they missed out on that....I was blessed to be with him so much.

So, grieve for those who didn't get to know him...and share a story or teo.

Let the feelings swell....you deserve it.

And, thank those that bring up a memories that wets your eye...for in that moment, you felt his love again.

I've been on meds for almost 1 year now. Up until 1 months ago, I never thought I would get better. I had one long herx Dec-Feb. Before that severe herxes in August and October. Maybe you are on the right track?

Others may have some less expensive herbal meds you may be able to use. One I use is artemisinin and you can get 30-45 day supply for $17. But I think you'll need to combine it with other meds.

Please take care. Maybe you could start on some meds? When I asked my doc what my husband should do because he had a sore elbow and a stiff neck. He told me to have him take una de gato. He said it was effective for early stages - however, I haven't done any research on this. It isn't very expensive though.

I'm sure that the stress of losing a son has played a big part in your wife getting worse.
May be a good idea to check with Dr C, if you haven't done so lately.

Thank you so much for taking the time & energy to give us an update.

One reason your dear wife might seem to be going back is the stress of your loss. This would set things off for sure.

I agree perhaps shes becoming so frail to that the meds might be to much.

Have you seen tincups list of meds that are cheeper.

I know that stress can aggravate lyme, it must be so difficult for both of you. I don't know if I have seen or read this before, but I wonder what you diet is like. I know when I was on biaxin and flagyl, what I ate affected me greatly, especially my herxes. I ended up eating about 6 - 7 times day very small meals, otherwise felt just awful. Take pills after eating with warm/hot glass of water, sip very slowly until large glass of water is finished. Then rest for about 20 min. Helped me.

I also take advil for the head pain and any other pain for that matter. The weather affects my head aches, especially hot weather, so try to drink as much as possible.

I wish there was more I could do to help. I will keep you both and your son in my prayers. God Bless.

About the Flagyl...and the Biaxin for that matter, those are both pretty tough medicines. I used to be on Biaxin and it took me awhile before I handled it very well, but I did eventually handle it really well, the herxes came easier and farther between...then I plateaued out and since then I've been on tons of different meds and combos. I'm currently on Flagyl, with Zithromax, Mepron, and IV Rocephin....when I added the Mepron and the Flagyl to the combination back in September, for about 3 weeks nothing really changed...and then I ended up with this massive headache, weight loss, loss of appetite (though I think those might have been secondary from the headache) ...anyways, I thought I was just getting worse very quickly....the headache lasted non stop (every day) for about....4 weeks..at the worst points I had to go into the ER for painkillers....then one day it just sorta let up, and then came back for about 2 more weeks....I persisted with the flagyl however.....cuz a lot of people told me that they had experienced the same type of herxes from flagyl...and after that headache was gone I started having dramatic improvement.

So, I'm not sure what your wife is experiencing....but I know personally that flagyl can really throw you for a loop with those herxes.

I hope that she starts to feel better soon, good luck with everything. Keep in touch and let us know how things go.

With love,
Lishka

quote:

---

Originally posted by Leroi:
Hello,

My wife was dxed with Lyme back in Feb after having a severe "headache" along with numbness and severe eye pain on the left side of her face and head by Dr.C in MO. We had previously been to 10 doctors here in MS without a diagnosis and there was an MRI done that showed nothing out of the ordinary.

She was on doxy for three months and there was a modicum of improvement, then she went on flagyl for a few weeks and there was a slight improvement; the first day she didn't wake up with a "headache" was Memorial Day (taking flagyl for around 10 days), but has since worsened.

Our middle son, Will, drowned on Memorial Day; he was twenty-six. We are very distraught but know he is with The Lord now.

She can only stay on abx for a few days at a time before severe herxes send her almost back where she began.

She recently combined Biaxin with a sliver of flagyl and is now experiencing a severe herx (and stopped abx). We have another appointment set up for July 5.

I think I may also have Lyme because I don't think clearly anymore and my right elbow has been hurting badly (only when I move it) for several months and back several years ago I was disabled by a strange skin condition with muscle and bone involvement that was never satisfactorily diagnosed.

It was called a South American fungus because I was a produce man and was slightly injured (splinters from a wooden crate) and this is the area where the lesions began.

We are financially very poor (my disability check is all we get), but we will be able to rent a car and keep the appointment on July 5. My wife doesn't qualify for a disability check or Medicaid or Medicare.

The only thing that helps my wife get settled down so she can "sleep" is for me to massage her scalp and neck for hours (which I don't mind doing at all); she takes Anacin and Advil Liquigels at different times trying to get a little relief.

She has lost a lot of weight; she is five feet tall and weighs ~100lbs. She used to weigh about 130. She can't eat when her head hurts very badly and I am very worried.

Thanks for any advice.

---

I agree with Troutscout's recommendation of looking into the Marshall Protocol. My husband has been very ill for 2 years and can not tolerate Flagyl. He is now on the protocol and doing MUCH better...along with other antibiotics.

Please look into this for your wife. Search for Marshall Protocol or Sarcoidosis to get this info we are mentioning.

Hang in there and keep looking toward Him.
Lisalyme2003

I just wanted to mention a couple of things. My daughter and I did Biaxin our first year of treatment, and we have since found zithromax to be gentler and, over time, more effective. And if "herxes" are really bad, we decrease meds or take a couple of days off. Sometimes an increase in symptoms is a sign of progress, but sometimes it is a sign that treatment is too aggressive too soon.

The other thing is that anacin and advil can cause a terrible problem with rebound headaches, which are hard to distinguish from the original problem (you know this ,probably). I just want to let you know that in researching this problem for my daughter, I found out that naproxen sodium (Aleve) is the only such drug that does not cause rebound. So we switched to using Aleve.

It occurred to me to ask whether your wife is menopausal. In our house, puberty and menopause seem relevant in some ways that I can't quite specify, except that problems seem to get exacerbated by hormone fluctuations.

It is nice that you enjoy doing massage for your wife, but be careful of your sore arm! Hope you can also get tested.

I just wanted to mention a couple of things. My daughter and I did Biaxin our first year of treatment, and we have since found zithromax to be gentler and, over time, more effective. And if "herxes" are really bad, we decrease meds or take a couple of days off. Sometimes an increase in symptoms is a sign of progress, but sometimes it is a sign that treatment is too aggressive too soon.

The other thing is that anacin and advil can cause a terrible problem with rebound headaches, which are hard to distinguish from the original problem (you know this ,probably). I just want to let you know that in researching this problem for my daughter, I found out that naproxen sodium (Aleve) is the only such drug that does not cause rebound. So we switched to using Aleve.

It occurred to me to ask whether your wife is menopausal. In our house, puberty and menopause seem relevant in some ways that I can't quite specify, except that problems seem to get exacerbated by hormone fluctuations.

It is nice that you enjoy doing massage for your wife, but be careful of your sore arm! Hope you can also get tested.

I am about to go on a new protocol - cedax, biaxin, plaquinol, and a pulsing of flagyl. It's so hard to deal with anything when you are herxing. Also, money troubles affect your ability to get good care and create additional anxiety. I can identify with you there.

I will pray for you and your family.

My wife feels a little better today, so maybe we were being too agressive with abx and she will come out of this herx soon. She took a lot of vitamin C yesterday and it seems to have helped clear some of the toxins. She also takes olive oil and charcoal.

She does not come out of the herxes until we restart abx even though she doesn't feel very well at all (not that she ever really feels good).

Usually we wait three or four days and then restart abx anyway and usually this makes her feel better; her sickness doesn't improve when off of abx, only when we restart abx.

I think we will restart Biaxin in a few days, then in a few more days we will re-introduce a sliver of Flagyl if possible.

I will speak to Dr. C about the Marshall protocol when we see him July 5.

I am so sorry to hear of your loss. I can't imagine the pain it has caused you and your wife.

Are you checking with your wife's doctor before going off and back on the abx? It's very important that you do.

You want to make sure your wife is not putting herself in a position where the Lyme bacteria becomes immune to some of the abx. If this happens, her abx options will be limited.

I hope you both find peace and health.

Thank you for your sympathy.

Dr. C gave us a lot of literature to go by, but it is confusing, perhaps my brain has been affected by my own disease?

He says that there has never been a case where Lyme bacteria has mutated to the point of becoming immune to the abx. He has done 17 years of research and attends international conferences on Lyme and we have a lot of faith in him.

He said the most beautiful prayer with us I have ever heard. He also said that if my wife got better it had nothing to do with him or the abx, that all credit would go to GOD.

[added]

In the literature he gave us, it says to go off abx at the first sign of herx and to restart when feeling better or to restart if not feeling better anyway. The latter is what seems to work for my wife; she does not seem to feel better until abx are restarted.

Just wanted to let you know about another new option.

I will ask Dr.C about Ketek, thanks for the suggestion.

We have recently had some success with a product called DetoxMax Plus (recommended instead of kelation therapy by Dr.C) and my wife feels better than she has in a very long time. She is currently taking Clindamycin and Quninine alternating with Amoxicillin every ten days and she also takes a Flagyl every day or so.

I can't imagine how devastating this is for you. The loss of a son must be emotionally draining, compounded by the physical stress of Lyme.

I did not get headaches until I started treatment for Lyme. I never realized what others went through with migraines until starting abx. Flagyl gave me a non-stop headache. Advil does help, when I am desperate to relieve the pain. I have tried stonger meds but Advil seems to work best and is cost effective. I don't think it can be taken with Anacin though.

It sounds like you and Dr. C are handling your wife's condition as best as is possible. There just seems to be no way around the herxes. Rest and water help. It is important for her to eat, when she can. I lost close to 60#s in 3 months. My Dr. was going to put me on a feeding tube so, I started eating, even when I didn't feel like it: yogurt, oatmeal, plain broth & sometimes apple juice. I slowly gained some strength back, enough to handle the meds again.

I wish you both well. Please stay in touch.

Trout: My heart skipped a beat when I read your second post. I had a wonderful first cousin, whom I had grown up with. His name was Craig. He died about 17 years ago at age 21. I still miss him. You brought back some good memories for me. Small world.

I can't imagine how devastating this is for you. The loss of a son must be emotionally draining, compounded by the physical stress of Lyme.

I did not get headaches until I started treatment for Lyme. I never realized what others went through with migraines until starting abx. Flagyl gave me a non-stop headache. Advil does help, when I am desperate to relieve the pain. I have tried stonger meds but Advil seems to work best and is cost effective. I don't think it can be taken with Anacin though.

It sounds like you and Dr. C are handling your wife's condition as best as is possible. There just seems to be no way around the herxes. Rest and water help. It is important for her to eat, when she can. I lost close to 60#s in 3 months. My Dr. was going to put me on a feeding tube so, I started eating, even when I didn't feel like it: yogurt, oatmeal, plain broth & sometimes apple juice. I slowly gained some strength back, enough to handle the meds again.

I wish you both well. Please stay in touch.

Trout: My heart skipped a beat when I read your second post. I had a wonderful first cousin, whom I had grown up with. His name was Craig. He died about 17 years ago at age 21. I still miss him. You brought back some good memories for me. Small world.

I can't imagine how devastating this is for you. The loss of a son must be emotionally draining, compounded by the physical stress of Lyme.

I did not get headaches until I started treatment for Lyme. I never realized what others went through with migraines until starting abx. Flagyl gave me a non-stop headache. Advil does help, when I am desperate to relieve the pain. I have tried stonger meds but Advil seems to work best and is cost effective. I don't think it can be taken with Anacin though.

It sounds like you and Dr. C are handling your wife's condition as best as is possible. There just seems to be no way around the herxes. Rest and water help. It is important for her to eat, when she can. I lost close to 60#s in 3 months. My Dr. was going to put me on a feeding tube so, I started eating, even when I didn't feel like it: yogurt, oatmeal, plain broth & sometimes apple juice. I slowly gained some strength back, enough to handle the meds again.

I wish you both well. Please stay in touch.

Trout: My heart skipped a beat when I read your second post. I had a wonderful first cousin, whom I had grown up with. His name was Craig. He died about 17 years ago at age 21. I still miss him. You brought back some good memories for me. Small world.

Dear Leroi,
I read your post concerning your wife's situation and your understandable concern.

I know this is a painfully hard time to see her deal with this illness and the side effects of the medications.

I'd like to recommend that you go to page1 on Medical and look for the topic "please help; at the end of my rope" by Lymelady.

Read the all the reply's particularly the ones by one called Tin Cup. She has had this illness for years and has some of the best advice and comments with respect to medications and the effects of "herxing."

I believe you will find this very reassuring and helpful. All the best you & your wife in the days of healing ahead.