I Think I Might Have Lyme Disease?

I just now came to this realization and have set up for myself to get tested next week.

I spent a few days on vacation where I went on walks in flea season, did not notice any ticks on me or any rashes at the time, but symptoms began after that trip.

If it is discovered I do indeed have lyme disease, is it too late? Are my symptoms permanent, regardless of a course of anti-biotics?

Symptoms started June 1st.

Age: 25

Symptoms:

Static/blurry vision

Tinnitus

minor muscle pain

neck stiffness

headaches

tinnitus

depression

one rash on my upper leg

I unfortunately haven't been tested yet because I thought my tinnitus was the stem of my issues, but upon further research I think I could be wrong. During the time period of tinnitus on-set I took a lot of Ibuprofen for wrist pain, and I was certain this was the cause.

 

@DebInAustralia may be able to offer you some advice.

 

> do you have a lyme literate doctor in your area? where are you from? when you find a LLMD, you need to start testing for borrelia and for coinfections; with the realisation, that these tests aren't terribly accurate 100% of the time. So, tests are only one part of working out if you have lyme. Other things your doctor will want to take into account are your history ie where you were at the time of the? bite, clinical presentation, and response to any treatment that youve initiated. I know people who have never tested positive for lyme/coinfections, who have been treated nevertheless because their clinical symptoms were compelling, and their subsequent improvement with treatment strengthened the suspicion of infection and justified its continuance.

> assuming you have a LLMD, what you can do in the meanwhile is get on some treatment whilst you wait to do appropriate treatment. By the way, you need to ensure you test and treat coinfections too, or you will find you will lengthen your recovery time. (From memory, if you go after the lyme first, ive read it can drive this bacteria intracellularly, adding to treatment difficulty)

Off the top of my head, have a look at Cowden, Klinghardt, and Buhner protocols; the latter I am most offay with.

Buhner recommends the following for new tick bites. You could start this protocol immediately whilst you wait for your tests.

3000mg astragalus daily for 30 days, then 1000mg thereafter indefinitely.
He said you can also use a paste from mixing astragalus (immune booster) with green clay and apply to the suspected bite area.

Obviously the earlier you can treat your lyme, the better the chance you have at preventing its progression to chronic illness.

I don't believe it is ever "too late". I have recently spoken to 2 Australian girls with chronic lyme and coinfections, who are now in remission after hyperthermia treatment and IV abs. I have also read many stories of people healing with natural herbs which aim to rebuild the immune system and cellular nutrition.

Here is a link to his website.

http://buhnerhealinglyme.com/the-protocols/

The other thing to consider is doxycycline as a prophylaxis. (I've had spikes and increased hyperacusis from doxy, which is why for now I am doing a cephalosporin - ceftin and buhner's herbal protocol for lyme/mycoplasma/babesia c duncani)

Books that helped me were:

How can I get better by Richard Horowitz
Stephen Buhner has a range of books about his use of Native American herbs along with a web site.


> in short, get on some treatment first, then see your LLMD and get the tests, and go from there. Don't panic. Let me know how you get on.

 

Hi @DebInAustralia -- Great post! I saw a couple days Richard Horowitz was in the news regarding a novel coronavirus treatment. I think it takes a good out of the box thinkers like Richard Horowitz to come up with safe and effective treatments for COVID-19. -- I just ran across something I wrote on some of my own Lyme research on another forum about 10 years ago, and thought I'd post it here:
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liquid sky said:
I tested positive per Igenex for Lyme. Treated for over a year on strong doses of antibiotics. I only got worse. I noticed a lot of the Lyme literate physicians are interested in HGRV's. They are looking for a way to treat those who do not respond to antibiotics. There are a lot of people who don't get better on antibiotics.
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My Reply: (Somehow the apostrophes got deleted when they transferred to a new forum software)

After getting a positive Lyme Disease diagnosis, some of my initial research indicated what you wrote above. Given how sensitive I am to medications, I was very hesitant to start any kind of antibiotic therapy until I learned more. This is some of what I learned:

1) Virtually everybody who has Lyme has a unique situation. There are several "well-known" Lyme bacteria infections, plus many more "co-infections". Some Lyme researchers estimate there could be as many as 300 different co-infections, with many of them yet unknown and unidentified; each individual generally has "several" co-infections. Certain antibiotics just have no effect at all on certain co-infections, so if a doctor doesnt follow through with a unique combination and delivery of antibiotics, then they may have little to no effect. Plus theres the possibility of a person getting worse.

2) The well-known Lyme bacteria can be in three different forms; a) spirochete; b) cellwall-deficient form; and c) cyst form. Antibiotics work best (perhaps exclusively) on the spirochete form; they are affective because of their ability to disrupt bacterial cell wall replication. Antiobiotics also work best when spirochetes are in the bloodstream, and not embedded in the muscles, bones, teeth, joints, neurological system, etc. Thats why its so important to treat new Lyme infections with antibiotics as soon as possible, to eradicate it before it has a chance to embed itself deeper into the body.

If it does get embedded deeper into the body, it is then called chronic Lyme. Conventional doctors generally believe there is no such thing as chronic Lyme. Most doctors will treat for Lyme if a patient presents with a bullseye rash, and a positive test for Lyme. But if the person doesnt improve after 30 days, they often conclude they never had Lyme to begin with. This is because ISDA guidelines say all Lyme bacteria will be eradicated within 30 days using antibiotics, though there is apparently no scientific evidence to support this thesis. Thats why so many with chronic Lyme seek out an LLMD.

3) Various things going on in the body can prevent antibiotics and other treatments from working well. I read of one instance where a young girl was not making progress on antibiotics, so they did a little more searching, and discovered she had a serious pituitary gland deficiency, or something like that. Once they corrected this, she started making steady progress. Unfortunately, Lyme, similarly to CFS, generally disrupts the HPA axis. I can see that in some instances at least, an HPA axis dysfunction could prevent a person being treated for Lyme from making good progress, or any at all.

4) Focal infections: Many people have unresolved focal infections in their bodies that can cause major disruptions in a persons health. These can result from failed root canals, and other types of oral surgery that was not properly done or that developed complications somewhere along the line. There are many people who have recovered from their ME/CFS just by treating these kinds of infections. So if a person had both Lyme and an oral infection, treating the Lyme alone will not resolve the accompanying focal infection issues. These focal infections are not only oral. They can also settle in the gallbladder, joints, major organs, etc.

5) Detoxification Issues: When Lyme bacteria are killed, they release high levels of neurotoxins. If these neurotoxins are not efficiently eliminated from the body, it can be major obstacle to improved health. Detoxification issues are even more critical for those with a methylation cycle block, which it appears most of us with Lyme and/or CFS are dealing with.

6) Chronic infections of all kinds can do a lot of damage to the body. If a person is to treat Lyme successfully, this damage needs to be identified and effectively addressed in order to achieve better health. If a person is left with a disrupted HPA axis, adrenal exhaustion, liver toxicity, etc., theyre still going to be dealing with major health issues, even if the Lyme bacteria has been eradicated.

These are some of the factors Im considering as I embark on my own Lyme treatment journey. My descriptions may not be totally accurate, but I think theyre generally pretty close to what Lyme patients are dealing with. Im no expert on all this, and I know there are other factors that may be just as or more important than the ones Ive listed. I guess a main thing I keep in mind for myself is that this is all very complex, and Lyme patients will have unique situations that will result in a number of circumstances with treatment needing to be adjusted accordingly. Which again, is why most people with Lyme seek out an LLMD.

But LLMDs vary considerably as well in the approach they take, and their competency. Many have not heard of, or do not use Rife machines. While Ive heard of many getting well on antibiotics alone, Im not convinced all were successful in completely eradicating some of the deep seated Lyme bacteria. It can lay dormant in cyst form for long periods of time, only to attempt to migrate and emerge back into bloodstream when immune system vulnerability allows it. Thats why people who choose to use Rife machines will do it regularly, long after they feel completely well. It can kill these dormant bacteria when they emerge from their sanctuaries.

I hadnt expected this post to be so long. There are no easy answers to this complex disease, and many who study it have disagreements about many things, including treatment strategies. In the end, we all have to choose what we believe is likely to be true, and what we feel is right for us. In my case, I dont know what percentage Lyme Disease is contributing to my health issues. I guess it could be relatively little, but then again, it could be as much as 90-100%. Since Ive read of many people with Lyme making significant progress after beginning treatment, Ive decided to focus on that, to the somewhat exclusion of pursuing other avenues. It seems many people treating their Lyme end up experiencing significant improvement in their health; most people with CFS dont.

Best Regards...

 

Hi @DebInAustralia. I have severe tinnitus and I tested positive for Lyme disease. I had a spike from Doxycycline in the past when I was treating bacterial prostatitis.

I take the same antibiotic for my Lyme Disease as you, Ceftin. I am extremely worried that it will make my tinnitus worse. Did you have any problem with it? I need to take it for 21 days. I'm currently on day 5. Today my tinnitus is louder, however, I normally have louder and better days as well, but I am freaking out.

Let me know please did you have any increase in your tinnitus from taking Ceftin?

 

Hi Ben.

Don't freak out.

You're going to be ok.

I've taken (with success, though ongoing) Buhner's approach.

I tried antibiotics in the early days, but didn't help me.

I think the Doxycycline spiked me.

Ceftin didn't exacerbate my tinnitus. Like yours, mine fluctuates.

I've interrupted my treatment at various points for fear I'm making my tinnitus worse. I totally get how worrisome it is.

It is a cousin of Penicillin, which I feel is probably safer than taking -icins, fluoroquinolones (Cipro caused mine), and aminoglycosides.

What is the cause of your tinnitus? Aside from borrelia, what else (if you don't mind me asking) are you treating?

Feel free to reach out when you need to, and let me know how you go.

You're not alone. You are going to heal.

 

Thank you very much for your response. I had a tick bite a month ago. I have positive ELISA IgM. My doctor didn't run any further tests to confirm this result and said I should take Doxycycline or Clarithromycin. I had a bad experience with Doxycycline. I researched Clarithromycin but found it could also be very hard on the ears. I requested Ceftin but for some reason, she didn't want to prescribe it at all. But I said that if it is not Ceftin, I am not taking anything and rather die. My tinnitus is brutal I can't risk it further with ototoxic drugs. It is so hard living with tinnitus. I worry about any disease you catch not because of the disease itself but because you need to take medication that can worsen the tinnitus. Now I live in fear that tinnitus will get worse from Ceftin. I need to take it for 21 days. Never in my life was I taking any medication for such a long time.

My tinnitus is noise-induced. I have had it since 1999. It has always been loud but never spiked from noise or meds. Then in 2018 after an MRI it got brutal, it literally made me a disabled person. Can't go outside, can't drive, can't talk to people, and cant work. I have been living indoors for 2 years. It spikes from every noise, sometimes it calms down, and sometimes remains at a new level. Earplugs or earmuffs don't help much it still spikes badly.

When I was diagnosed with Lyme I was thinking of just ending it all.

 

If you've been indoors for 2 years, how could you get Lyme now? Your home probably doesn't have ticks.

 

Very good question. What happened is I had to go and visit a doctor because I also have prostatitis. That's in a different city. My father lives near that city in a very beautiful place in the forest. He called and because he knows I have tinnitus recommend to stay with him as it is very quiet there. I went by car my tinnitus spiked and one day when I was in the forest I had a tick attached. And now I have permanent tinnitus increase I have severe pain in my prostate and I have Lyme.

 

Well, you have treatment options.

You don't have to do antibiotics.

Like I said, I've been greatly helped with naturopathy and traditional Chinese herbals, following Buhner's recommendations.

I would avoid Artemesia, but have no issues with any other herbs.

 

I don't believe herbs can help. I have tried herbs for my prostatitis and had 0 success.

But also I am sure Ceftin will damage me further.

How long did you take Ceftin for?

 

I took Ceftin for a week before switching over to herbs.

Have you tried Buhner's herbs?

You do know it takes a long while to treat... persistence and continuity is necessary.

 

Hi, I stopped taking Ceftin on the 10th day due to developing a severe tinnitus spike and now I have developed neuropathy, tingling in my hand and feet.

 

Which infections do you have?

 

I don't know. I just got Elisa for Lyme. That was positive. Here in Bulgaria, we don't have panels for co-infections. I don't know what to do anymore. I am thinking of just ending it all.

 

Hi there,

My life is sink or swim. I chose to attempt to swim or, at least keep my head above water. I am juggling multiple significant health challenges; including tinnitus and hyperacusis.

I can honestly say that in spite of everything, my life is pretty decent. Yours can be too. My biggest issue right now is recovering from a head injury early July.

With regards to Lyme, you have options outside of mainstream. If you want me to detail those, I am happy to share that with you.

Testing:

• positive Borrelia at the Rickettsial Lab - Geelong Hospital
• equivocal mycoplasma pneumoniae - Australian Biologics - Sydney
• positive multiple strains Borrelia, Babesia, mycoplasma pnuemoniae/fermentens, Ehrlichia, reactivated EBV, elevated CD57 indicating chronic immune suppression - Armin Labs - Germany
• replicated results with Igenex - USA
• positive Bartonella - Australian Biologics

Treatment:

I trialled mainstream, which did nothing for my symptoms which were primarily severe air hunger, palpitations, rapid atrial fibrillation, tachycardia (POTS like symptoms), joint pain, headaches, UTI symptoms, mood dysregulation, fever, generalised lymphodenopathy, extreme fatigue

I have settled with a wonderful Lyme literate naturopath, who does telehealth for the past 2.5 years.

The air hunger has lifted, along with my joint and heart symptoms.

None of the traditional Chinese herbs that he has prescribed have a negative impact on my tinnitus. The only one I would say to stay away from is ARTEMESIA, which can exacerbate tinnitus.

I am also taking nutritional supplements to help support the antimicrobial work.

If you can't afford / source a Lyme literate naturopath, I would strongly urge you to read Stephen Buhner's protocols online or buy his books on treating your infections with herbs.

If you have Lyme, you will have other friends to deal with. You probably know that many practitioners these days merely treat symptoms rather than relying on diagnostics, given how unreliable they can be. Dr. Horowitz has an online questionnaire that you can complete in order to give you some idea what you are dealing with.

Dr. Marty Ross has free Q and A lives if you go to his page. He also has a lot of great content for free online.

Don't give up. You can get your life back. Please let me know how you are going and what you think?