Just found out I have active lyme disease. I am stunned. Help!

[lizw118]

Hi Ecoclimber,
I was just reading about the similarities between syphilis and lyme. Yuck. I am very depressed to be in the late stage, if that is indeed what is happening. But what I still can't figure out for lyme (or syphilis, for that matter) is whether antibiotic therapy is even helpful in these later stages. When you say it can be cured, are you talking about earlier stages? How do you know if your infection is gone in the late stages? Also, is this a herx thing I am going through, and if so, is it an indication that the infection is being killed? Or am I just further damaging my body? I read that piece about JP Morgan in the NY Times. I guess Lyme is affecting the economy directly now!
Thanks
Liz

 

[filfla4]

Hi Liz,

I just wanted to let you know that you're not alone!!! I have been ill for 19yrs supposedly with ME. This May just gone I tested positive for Lyme by PCR and DNA Sequencing. I am on my 13th day of a 30-day IV antibiotic treatment. I am being given 2g of Ceftriaxone daily. Believe me I feel like hell!! The first couple of days I developed a head cold and a higher than usual low-grade fever. When that cleared up I sort of got a burst of energy but now I think I've got a low-grade fever almost every day. My head aches - literally aches in specific points - sharp pain that migrates from one place to another, as though I've hit my head against something. It's not constant but comes and goes. I'm exhausted all the time and terrible aches and pains in my limbs.

The plan is that when I finish this course of IV abx, I will switch to three different types of oral abx. It's not a pleasant ride.

xx

 

[Ema]

I started taking doxy. I decided to do it because I am still not positive this is not a new infection from the test results.

How much doxy are you taking?

Are you still having herxes?

Vitamin C can be helpful for herxing as can Epsom salt baths and broken cell wall chlorella. I had about 4 weeks of herxing when I started AB's. It was not all that pleasant to go through but it did pass and I felt MUCH better. I also think that 4 weeks is unusual. Most people only have a week or two.

what is a good anti-biofilm protocol?

Have you tried Lumbrokinase? Also possibly Banderol, Samento, or Rechts-Regulat. Lactoferrin may also be helpful.

Also, can I get tested for co-infections at quest?

I would do all this type of testing at IgeneX if possible.

 

[Dufresne]

Hi Liz, you might want to try supporting your detox systems some. Homeopathy has always worked well for me so that's what I'd recommend, as well as the appropriate herbs to support your liver, kidneys and lymphatic system.

Also I've found cutting sugar and carbs to be effective at reducing inflammation. Vitamin C is good. And alkalizing your body will slow things down if the killing gets too intense, but that's all it does is slow things down.

Think of yourself as a battlefield, you're leaving rotting corpses all about you, of course it stinks.

 

[lizw118]

Hi Liz,

I just wanted to let you know that you're not alone!!! I have been ill for 19yrs supposedly with ME. This May just gone I tested positive for Lyme by PCR and DNA Sequencing. I am on my 13th day of a 30-day IV antibiotic treatment. I am being given 2g of Ceftriaxone daily. Believe me I feel like hell!! The first couple of days I developed a head cold and a higher than usual low-grade fever. When that cleared up I sort of got a burst of energy but now I think I've got a low-grade fever almost every day. My head aches - literally aches in specific points - sharp pain that migrates from one place to another, as though I've hit my head against something. It's not constant but comes and goes. I'm exhausted all the time and terrible aches and pains in my limbs.

The plan is that when I finish this course of IV abx, I will switch to three different types of oral abx. It's not a pleasant ride.

xx

Oh dear, yes it sounds like you are going through something very similar. I can completely relate to the feeling that you have been hit on the head with something and the pain moves around the head from place to place. I feel as if my brain might be swollen. My face is also quite swollen and I feel all like my whole head is made of lead.
So does your doc think that you have had Lyme this whole time? Are you seeing a "lyme literate" MD? I imagine if you are on I.V. that is a lot more than oral ABX, right? So it makes sense you would be herxing a lot. Did you have these symptoms before you started ABX?
I am so sorry you are feeling bad. I hope we both feel better soon!
Liz

 

[lizw118]

How much doxy are you taking?

Are you still having herxes?

Vitamin C can be helpful for herxing as can Epsom salt baths and broken cell wall chlorella. I had about 4 weeks of herxing when I started AB's. It was not all that pleasant to go through but it did pass and I felt MUCH better. I also think that 4 weeks is unusual. Most people only have a week or two.




Have you tried Lumbrokinase? Also possibly Banderol, Samento, or Rechts-Regulat. Lactoferrin may also be helpful.



I would do all this type of testing at IgeneX if possible.

Hi Ema
The doctor gave me the standard 200 mg per day of doxy for a month. Then I might take more if I need to. I have read about Banderol and Samento and I want to order some. Is Lumbrokinase better than Nattokinase?
The epsom salt bath is a great idea. It has been so awfully hot out I haven't thought of taking one yet. How long has it been since you were on ABX? Are you still feeling better?
I really do hope this is herxing and that it wears off soon. But then if I feel better after that, will I feel worse when I am off the ABX again? Confusing!
Thanks for the advice. It is extremely helpful!
Liz

 

[lizw118]

Hi Liz, you might want to try supporting your detox systems some. Homeopathy has always worked well for me so that's what I'd recommend, as well as the appropriate herbs to support your liver, kidneys and lymphatic system.

Also I've found cutting sugar and carbs to be effective at reducing inflammation. Vitamin C is good. And alkalizing your body will slow things down if the killing gets too intense, but that's all it does is slow things down.

Think of yourself as a battlefield, you're leaving rotting corpses all about you, of course it stinks.

I have been lapsing on the Vit. C. I need to get back on that. What about trying a small amount of glutathione? I tried glutathione before and didn't do well on it, but I now think that is because it was bringing the Lyme symptoms back. Maybe if I tried it now it could help me get all the biotoxins out? Or is that a bad idea?
Thanks to all of you for the help. I really do appreciate it.
Liz

 

[filfla4]

@ Liz
Yup, I feel as though my brain is swollen too but then I already know thru testing that I have a lot of inflammation. You asked if I'm see a LLMD - yes, but it's complicated. My doc is in a different country and I have to travel to see him. I now have a local Infectious Diseases Specialist (who I would not consider as a LLMD) who is willing to treat me by IV for just four weeks. That's where his treatment will stop!!!! However my doc has prescribed three different oral abx. He does think I've had Lyme all along misdiagnosed as ME. He knows I am doing the IV treatment and then will switch to the oral meds once the course is over. Yes, I did have these symptoms before I started the abx but probably not as intensely as I have them now. I also take regular VitB12 jabs, Nexavir and stomach meds.

Dufresne
Thanks for the tips. Definitely will be taking my Vit C tomorrow and I want to get some Epsom salts to soak in. I'm trying to cut out sugar and carbs and am eating as many leafy greens as I possibly can. Any other suggestions would be very welcome!!

Any advice anyone on whether one should be complimenting traditional abx treatment with more alternative stuff like Samento? Or should one wait until off the abx?

Thanks guys!

 

[Ecoclimber]

Hi Ecoclimber,
I was just reading about the similarities between syphilis and lyme. Yuck. I am very depressed to be in the late stage, if that is indeed what is happening. But what I still can't figure out for Lyme (or syphilis, for that matter) is whether antibiotic therapy is even helpful in these later stages. When you say it can be cured, are you talking about earlier stages? How do you know if your infection is gone in the late stages? Also, is this a herx thing I am going through, and if so, is it an indication that the infection is being killed? Or am I just further damaging my body? I read that piece about JP Morgan in the NY Times. I guess Lyme is affecting the economy directly now!
Thanks
Liz

Third Stage could cause irreversible neurological damage.Everyone's metabolism, immune system, exposure before treatment and genetics are all different. So one must view anecdotal for what it is. Too short of a period on abx, can result in a flare years later. Normal treatment is with a cocktail regime lasting between 5-8 months. Check with your LLMD reference any comments made on these threads as to treatment protocols. What works for one patient may not work for you. Also, there are variations to the illness in different parts of the country and around the world. This is not meant as medical advice but for info. only.

For neuro Lyme to get pass the blood/brain: Minocycline, Flagyl ( Metronidazole) as well as Tindamax

Cocktail can consist:
Biaxin
Plaquenil
Tetracycline
Substitutions can be made with adverse reaction to the above with these below
Doxy
Cefzil

RA drugs Secnidazole, Nimorizole, Allopurinol alone and/or part of a combination of agents

Benicar (to reduce the inflammation so the abx could get at the spirochetes more easily), Vitamin-D supplementation

For Nausea:
peppermint, ginger, chamomile, slippery elm, red raspberry leaf tea, spearmint, papaya, activated charcoal,and licorice root.

http://forums.phoenixrising.me/index.php?threads/13th-week-of-valcyte.8540/page-9 or page-10 mentions a comment from undcvr
There was a lady I know at a Lyme support group who was diagnosed with Lyme in the early stages. Somehow she stumbled onto eating Artichokes regularly and says that she is almost back to well now.

Best to check the Lyme disease forums but wanted to alert ME/CFS patients to some similarity to Lyme disease as well as possible co-infections.

Eco

 

[Ema]

Hi Ema
The doctor gave me the standard 200 mg per day of doxy for a month. Then I might take more if I need to. I have read about Banderol and Samento and I want to order some. Is Lumbrokinase better than Nattokinase?
The epsom salt bath is a great idea. It has been so awfully hot out I haven't thought of taking one yet. How long has it been since you were on ABX? Are you still feeling better?
I really do hope this is herxing and that it wears off soon. But then if I feel better after that, will I feel worse when I am off the ABX again? Confusing!
Thanks for the advice. It is extremely helpful!
Liz

I hope you are still planning to do some follow up testing so you will know whether or not the AB's need to be continued past the first month.

Epsom salt baths work best with lukewarm water so that should help with the heat. I know a bath is the last thing that sounds good when it is eleventy billion degrees outside.

It is confusing because everyone is different. It really depends on the state of your immune system and if the time on antibiotics was enough to down the infection to a rate where your own body can now keep it in check.

I haven't personally done a lot with the herbal antibiotics but I know several people who have had good luck and my LLMD also uses them along with traditional ABs. I would try to work out what each one does and try to avoid overlapping. For example, my LLMD uses both grapefruit seed extract and Flagyl for the cyst form. I usually use one or the other rather than both at once.

I have also heard that it is important for the Samento to be TOA free.

I think that lumbrokinase is stronger than nattokinase but I think that they work similarly.

 

[xrunner]

I have also heard that it is important for the Samento to be TOA free.
I think that lumbrokinase is stronger than nattokinase but I think that they work similarly.

It depends on the strength of the particular brands. With Natto I need at least 8k FU enteric coated to feel anything, that's an absolute minimum.
Not sure if they work similarly but you experience them in a different way. Lumbro had a much stronger anti-inflammatory action from the start whilst Natto increased fatigue and joint inflammation during the first few weeks but then improved the inflammation. it seemed to go deeper and took me three months to get used to it.

Edta is probably more effective than enzymes at disrupting biofilm but I can't take it for the time being.

 

[Charles555nc]

Im really shocked/disappointed with this thread. People saying a positive lyme test from Quest "doesnt mean you have it for sure?" Or that you shouldnt bother trying to treat it with antibiotics? Just wow, thats just dangerous advice.

Just because you dont remember you got bitten by a tick, doesnt mean you didnt get bit. Early treatment is the best treatment, guaranteed.

You should also get tested for herpes virus infections, hhv6, epstein barr, etc etc, to see if you are a candidate for anti virals, famvir, valtrex. You should go after all your infections/coinfections as much as you can.

Hope you feel better.

 

[Ema]

Im really shocked/disappointed with this thread. People saying a positive lyme test from Quest "doesnt mean you have it for sure?" Or that you shouldnt bother trying to treat it with antibiotics? Just wow, thats just dangerous advice.

That isn't my impression of this thread at all.

The OP had a positive IgM test and a negative IgG test. That is unusual and may have something to do with the lab (Quest) rather than the true state of infection.

It was suggested by most that she start the antibiotic and then repeat the testing with IgeneX to get a better hold on her actual infection status before undertaking the months of AB therapy required to attack a long-standing infection.

I didn't see any suggestions not to treat with antibiotics.

 

[lizw118]

Hey everyone,
Ema and Ecoclimber, xrunner thanks for the additional advice. I have been reading this thread a lot and doing my own research, buying recommended supplements while continuing the doxy. I listened to an informative podcast interview with Dr. Nikolas Hedberg on itunes (part of a functional medicine series), which ended up being very informative, although I had not heard of the doctor before. He echoed many of the suggestions here.
I had co-infection tests performed through econolabs for bart. and bab. and they came out non-reactive/negative, which is good. I am scheduled to see my doctor in a couple of weeks and I will re-test for lyme and see where I am at, and if I need to continue the doxy. I'm feeling slightly better on the doxy in the past few days. Still not feeling great, though, and I have had some serious neurological/psychological symptoms that made me feel as if I was going slightly insane at times.
@ Charles, I totally understand the concern. I think people on this thread were simply letting me know that ABX for chronic lyme can have unpredictable effects and of course given that the gut can be such a problem for many of us, it is probably wise to use caution with ABX. However, the fact that I had a positive western blot made my decision to go on doxy somewhat easier. I appreciate the concern and well-wishes from all of you.
Liz

 

[richvank]

A part of me just wants to stop the ABX and forget about this and just treat the lyme like I have already been treating the CFS with methylation and metal detox (helping my immune system).
Liz

Hi, LIz.

I just want to say that I think that continuing with methylation as part of your overall treatment program for Lyme disease is a good idea. Improving the function of the methylation cycle and raising the levels of the folates and glutathione with a methylation protocol should help the function of the immune system, and particularly the cell-mediated immune system, which is necessary to go after the intracellular forms of the Borrelia bacteria.

Some of the ILADS physicians have incorporated methylation treatment into their overall protocols. The feedback I have received has been positive. I've been invited to speak at the ILADS conference in November, and I plan to talk about including methylation treatment in their Lyme treatment protocols.

I think that there is good reason to believe that Lyme disease can lead into ME/CFS for people who are genetically susceptible, and in fact, this may be what causes the development of "chronic Lyme disease."

Borrelia are known to take cysteine from their hosts, and that, together with the inflammation that is produced by the immune system, can be expected to lower glutathione in Lyme disease, which has been observed.

According to the GD-MCB hypothesis, if glutathione goes low enough, it provokes a functional B12 deficiency, which in turn leads to a partial block in methylation, followed by loss of folates and development of a stable vicious circle that makes ME/CFS chronic.

The resulting suppression of cell-mediated immunity likely makes it difficult for the body to fight Borrelia, forming another vicious circle. I think that part of the solution to this is to lift the partial methylation cycle block, while going after the bacteria directly is necessary as well.

Best regards,

Rich

 

[svetoslav80]

I think that there is good reason to believe that Lyme disease can lead into ME/CFS for people who are genetically susceptible, and in fact, this may be what causes the development of "chronic Lyme disease."

But then the question is if everyone with chronic lyme gets PEM, or only some of them, or maybe no one?

 

[richvank]

But then the question is if everyone with chronic lyme gets PEM, or only some of them, or maybe no one?

Hi, svetoslav.

That's an excellent question! I'll have to try to track down an answer.

Best regards,

Rich

 

[klimt]

But then the question is if everyone with chronic lyme gets PEM, or only some of them, or maybe no one?

Hey,

I don't think that PEM is a classic lyme symptom, although I have been wondering the same myself.

I've heard it said that it's not, and that if you're a lymie with PEM you have a babesia infection. It's the babesia that causes PEM, I gather probably because your red blood cells can't transport oxygen efficiently when it's needed.

I think it was someone on this forum that had said it, but I hadn't been able to confirm the information or whether that's a generally accepted concept for lyme disease.

I would be very interested to find out. I might post on one of the lyme forums and ask.

Interesting, because I had "ME" diagnosis and suffer from PEM but recently found out it's actually lyme I have.

I'm going to the BCA next month, and will find out what co-infections I have.

 

[klimt]

I found a post: a different one than I had read before - so quite a few people are saying it

http://forums.phoenixrising.me/index.php?threads/lyme-disease-and-xmrv.528/

"Anyway, I wanted to chime in on the Post-Exertional "Malaise" symptom. It is true that it is not necessarily associated with lyme itself. But it is a VERY signature symptom of Babesiosis.

I was able to exercise throughout my years of "CFS" (which was episodic). However that changed in '05 and I started having Post-Exertional "Malaise". I was finally diagnosed as infected with lyme and babesia last year.

I can really tell the difference in symptoms. Babesia really makes you feel worse with exercise. Regular antibiotics don't work against Babesia which is a protozoan like malaria. So someone treated for lyme and not babesia will still have fatigue problems."

Most of the people with lyme have more than one infection. Babesia is a very common co-infection. "



And another article, a woman with just babesia:

http://lymedisease.org/news/lyme_disease_views/news-how-babesiosis-changed-her-life.html

Until eight years ago, Quilter, then 46, was feeling fine. The middle school teacher also taught Irish dance to Alameda youths and played Irish music in concerts. That was before the symptoms arrived, when she became severely short of breath, fatigued after the most minor exertion and when muscle weakness and other ailments set in.

 

[richvank]

Hi, all.

I posed the question to a group that includes quite a few ILADS docs and leaders of Lyme support groups. I got several responses, and the consensus was that PEM/PEF is the norm in "chronic Lyme" patients, though there are some who do not have it. Of course "chronic Lyme" includes the coinfections that are often associated with Lyme disease per se, so it could be due to comorbid Babesiosis.

Best regards,

Rich